As patients with chronic kidney disease/end-stage renal disease, we’re constantly setting a new normal as we age. We become experts in simultaneously holding onto hope and achieving acceptance. We do all we can to maintain our physical health with the help of medical intervention and a renal diet.
But we must also continue to think expansively when it comes to maintaining our overall health. Over the past 30 years, I’ve come to define health as incorporating my entire being: spiritual, mental, physical, emotional, and social.
I was diagnosed with Wegener’s granulomatosis, which destroyed my kidneys in 1982, when I was 17. My doctor gave me a copy of “Anatomy of an Illness” by Norman Cousins and said, “Celeste, you’re beginning your life-long journey with chronic illness, and you have two choices: be a passive observer, allowing others to take the driver’s seat, or be the driver, taking control of your life when you can, experiencing the adventure, and setting your limits.”
I chose to be the driver.
February marks my 20th year on the transplant list—7,300 days. I’m 47 years old, but look and feel 15 years older. I was on hemodialysis from 1983 to 1986, when I received a cadaveric transplant that lasted until 1995. My kidney began rejecting in 1992, however, so I went back on the list and transitioned onto peritoneal dialysis in 1996 and hemodialysis in 2004.
During these years, I attended college, created a family, and built a career in higher education administration while at the same time being an advocate. Those years were full of love and joy, pain and sorrow, stress and growth. I believe that it was necessary for me to experience all of them to help me develop the coping mechanisms I needed for overall good health.
Let me share some specific tools that have helped get me through the past 30 years. These techniques support almost all aspects of health, whether you have a chronic illness or not.
It’s important to fill your life with activities that awaken your spirit and stir your soul. Some examples are meditation, massage therapy, religion, and the arts; or finding joy in nature, listening to music, and (one of my favorites) submerging in warm water.
Admittedly, this is a tough one. The constant management of an illness can wear you down. When it gets the better of me, I know that it’s time to seek support by talking with a life coach, a counselor, or a friend; also, I focus on finding meaning and purpose in life. Sometimes I light candles, fill the bathtub, climb in, and have a good cry. Once the candles have burned down, I know that it’s time to move on.
Exercise can be a struggle, not because we lack motivation, but because of physical constraints. Unfortunately, many of us have had kidney disease for years, and time, medication, and surgeries have taken their toll on our bodies. Joint problems, heart problems, or diabetes or other comorbidities make exercise more challenging. I determined that the way for me to keep moving was through physical and occupational therapy (PT/OT).
PT/OT is extremely helpful in devising an exercise plan, no matter what limitations you may have. Your physician can refer you to a therapist, and most insurance plans and Medicare will pay for a certain number of visits per year. Your regimen might include the following activities, among others:
• Stretching, which helps develop flexibility and balance
• Walking, which is great exercise and a wonderful social outlet (but it can put pressure on your joints)
• Swimming, which is the perfect choice for people with joint issues
• Biking, which provides an excellent low-impact workout
• Yoga, which encompasses different styles that focus on areas such as breathing, flexibility, relaxation, strength, and balance
• Workouts on a treadmill or an elliptical trainer or elliptical step machine, which are good for the cardiovascular system
Elliptical trainers or recumbent step machines provide benefits similar to those derived from running, but without the stress on your joints, especially if you use a recumbent step machine, which allows you to sit while you exercise.
Caring for our physical, spiritual, and mental well-being promotes emotional health as well. Additional ways to promote emotional health involve:
• Surrounding yourself with good friends and people who support you
• Pampering yourself
• Cooking a great meal with friends or people you love
• Eating chocolate (an easy one, but take your binders!)
• Being grateful for what you have
Chronic illness can make us feel isolated—utterly alone—even when we’re surrounded by family and friends. For most of us, this feeling of loneliness is transient, but if it lingers, there are ways to deal with it:
• Dancing (even cleaning the house to your favorite music to get you moving and smiling)
• Loving (embrace the miracle of love wherever you find it: in a spouse, a child, or a pet; in friendships or strangers who need a hand or a compassionate glance)
Living with kidney disease makes us keenly aware of what we eat, how much we drink, which pills we need to take, and which specific lifestyle changes our treatment demands. Yet caring for ourselves involves so much more. Taking a holistic approach can help us marvel at the mystery and magic of life and allows us to be all that we can be.
As Teddy Roosevelt put it, “Do what you can, with what you have, where you are.”
About the Author
Celeste Castillo Lee currently is a Senior Project Manager in the Office of the Provost at the University of Michigan. She also served as chief of staff to the President and CEO, Duke University Health System, and the Chancellor for Health Affairs at Duke University where she was active in the Patient and Family Centered Care initiatives. Celeste’s multiple memberships in non-profit health organizations keep her busy as an advisor and advocate primarily in Michigan and North Carolina as well as internationally. Celeste resides in Ann Arbor, MI, with her husband, Daniel Lee, PhD, and their son, Jonathan, 21.
Update: RSN is deeply saddened by of the passing of Celeste Castillo Lee on Thursday, February 9, 2017. She struggled most of her life with kidney disease and was on dialysis for 30 years. Our deepest sympathies to her family, friends and all that knew and loved her.
Celeste contributed greatly as an advocate for the kidney community and patient engagement. Her commitment and compassion impacted hundreds of thousands of patients and she will be missed.
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