The Unique Adult Experience

Living Your Best Life with Nephrotic Syndrome
By Bernadine Watson
Contributor to Washington Post, FSGS patient, wife, mother 

CLICK HERE to watch “The Unique Adult Experience” Webinar held last week and hosted by Bernadine 

In 1984, I was thirty-three years old and dealing with all of the stresses of being a single, working mother of an adolescent boy.  During a routine physical, my doctor added another worry to my plate. “You have excess protein in your urine” she announced at the end of our visit, sounding somewhat surprised. She had been my doctor a while and I was always very healthy.

“I suggest you see a nephrologist,” she continued.  “A small amount of protein in the urine is normal, but the amount you have could be a sign of kidney disease.”

Kidney disease, I thought to myself. But I’m only in my thirties and feel fine. I had every reason to feel a bit fatigued, given my responsibilities, but I didn’t believe I could have a serious illness.  As far as I knew kidney disease didn’t run in my family. Most important, I didn’t have time for kidney or any kind of disease.

Within a few weeks, however, I saw a nephrologist and was diagnosed with a kidney disease I had never heard of and could hardly pronounce: Focal Segmental Glomerulosclerosis or FSGS as it’s called by those in the know.

Thirty-one years have passed since my diagnosis.  During that time I’ve had what one of my doctors calls “a pretty good dose” of FSGS.   I’ve had two kidney transplants, spent five years on dialysis and suffered the pain, complications, inconvenience and sometimes embarrassment associated with having the disease. I know the terrible leg cramps, fatigue and nausea that can accompany dialysis; and the awful swelling, weight gain, bone loss and anxiety that can result from taking anti-rejection medications.  There have been times when the surgeries, pills, scars and doctors’ appointments have seemed unbearable. The truth is, FSGS has been a constant companion for nearly half of my life.

How in the world can you live your best life when you have a disease that can make you miserable and has actually tried to kill you?  Honestly, there are days when I know I won’t be at my best.  I may not feel well physically or may not be emotionally ready to deal with the world.  On these days, I just do my best to muddle through.
However, I find that I have fewer “bad” days since I’ve learned to make peace with FSGS.  I’ve decided I want to live as well as I can, despite the fact that I have a chronic illness.  Over the years, I’ve developed a few strategies for dealing with the physical, mental and emotional challenges of this disease.  There is no magic involved but on most days these strategies help me do pretty well.

1. Put Yourself First.
This may take a while to learn and may sound impractical or even selfish.  We all have jobs, families and other responsibilities that come with everyday life.  Many of us put others’ needs above our own, even when we don’t feel well.  I believe, however, that I am no good to anyone if I am always worn out or sick.  Putting yourself first means, asking for help from those around you; turning down request from others if you have too much on your plate or are not feeling your best; taking time off from work if and when you have the opportunity; avoiding people and situations that cause you stress and finding quiet time for yourself. You’ll be amazed at how much better you’ll feel if can do even a few of these things.

2. Take Full Responsibility For Your Health
Try handling your own health care like you would handle care for any other loved one, like our mother or our child.  Come to medical appointments on time and prepared to discuss issues that concern you. You and your nephrologist should be on the same team and have the same goal: keeping you as healthy as possible. Act like a member of the team. Ask any questions you have about your treatment.  Ask for help in accessing any specialist you need to help you deal with this disease.  Over the years, I’ve asked for and received referrals to nutritionists, orthopedists, physical therapists, mental health counselors and a psychiatrist—all to treat conditions related to FSGS.  Make sure you always have enough of your medications on hand and take them as prescribed. Be insistent with you medical team about responding to your requests for refills, since you, not they, will be the one who has to bear the consequences of missing doses of your medications.  Take the time to understand the side effects of your medicines and get help from your doctor in managing these effects.  Don’t suffer if you don’t have to.

3. Take Good Care of  Yourself
Taking good care of yourself is always a good idea, but especially if you have a chronic illness.  One of my favorite things to do for myself is to take naps. Naps help boost my mood and combat fatigue caused by my disease and some of the medications I have to take.  While I realize that physical activity isn’t everyone’s favorite thing, try to find exercises that you enjoy or at least can tolerate. I’ve found exercise to be a necessity, not a luxury.  While I’ve always been physically active, since being diagnosed with FSGS, I’ve become more intentional about my fitness routine.  I love yoga and find that it has made me stronger and lifts my spirits. I also lift weights and ride a bike to support my heart and bones.  Walking is a terrific activity that is easy and has many benefits.  Exercise will help you look and feel better and can help counter some of the weight gain caused by transplant medications.  Of course watching what and how much you eat is critical. I struggle with this all the time.  Prednisone makes me ravenous and sometimes I find myself eating something before I even realize what it is.  Fortunately, exercise helps.  So does reminding myself that my diet and weight have a direct impact on health.

4. Enjoy Your Life
Living with Nephrotic Syndrome is tough and can take a significant physical and emotional toll.  Try to remember that this disease is something that happened to your body.  You are not the disease and you did nothing to deserve it.  Find ways to enjoy your life and do the things you like to do. Listen to music, read books, go to the movies, volunteer at your church or in the community, get dressed up and go out with your friends. I find that doing the things I love reminds me that I am still me, in-spite of FSGS. I want to live my best life!