Katherine Soto has been on dialysis for 20 years. She decided early on that she would dialyze to live, not live to dialyze. Katherine’s kidney journey started at the age of 2 with kidney reflux. She experienced many infections and ended up with a urostomy at the age of 12. Katherine shares with RSN what she has learned living her entire life with kidney disease.
How long have you been on Dialysis?
I have been on dialysis for 20 years. I decided early on that I would dialyze to live, not live to dialyze.
My kidney journey started at the age of 2 with kidney reflux. I experienced many infections and ended up with a urostomy at the age of 12. Living with damaged kidneys caught up with me at the age of 36.
When did you start dialysis, and why?
I was not feeling well and had a backache. My husband took me to urgent care, and I ended up in the emergency room. I spent two weeks in the Intensive Care Unit (ICU) due to pneumonia, and heart and kidney failure. I had my first dialysis session in the ICU on November 2, 1998. My nurse told me two days later that she thought she would not see me again. She didn’t believe I would make it through my first night in the ICU. My first in-center dialysis was November 6, 1998.
What did you learn during your first treatments in the hospital?
Sometimes you must fight for information from health professionals, even though they are supposed to provide it. I called member services for dialysis information and learned there was a “Welcome to Dialysis” packet that I was supposed to get. Research for yourself.
Read what the medical professionals give you. Watch the medical videos. Learn everything you can about your diagnosis from your doctors. Keep written records of who you talked to and what they told you. If you do not want to do something they recommend, then you can refuse it. Nothing can be forced on you. Some doctors tried to force my husband to make me do things I did not want to do. I changed doctors. Change doctors until you find some who will work with you. Get the fistula done quickly. Chest catheters are a pain in the chest, so I put off getting a fistula for a few months until I knew I could live on dialysis.
Remember to take care of yourself while you are ill. Do one thing every day that makes you happy.
How do you take care of yourself as a dialysis patient?
I usually shower before dialysis treatments. I keep my doctor appointments, and I take a kit to my dialysis appointments to feel comfortable. The better you feel while on dialysis the more you will want to go.
My kit contains:
- A twin mattress pad and a twin sheet folded in half to make the chair more comfortable.
- A set of clean, comfortable clothes in case of bodily fluid problems.
- A large, soft blanket and skiers’ hand warmers to ward off the cold.
- A pillow for my head and shoulders, and a neck pillow to avoid injury.
- A snack bag with apple slices, cereal, or fruit snacks.
- An ice cup to keep close when I need a drink.
- A personal device for reading and playing games to keep my brain busy.
- Noise-cancelling headphones because a noisy dialysis center raises my anxiety level.
I also participate in the dialysis center’s contests and other activities. My husband and I won two Halloween costume contests. I bring treats on holidays and small gifts for patients and staff at Christmas. In November each year, I bring a treat to celebrate my dialysis anniversaries.
Have you done any other forms of dialysis?
I did 12 years of four-hour dialysis three days a week, and seven years of nocturnal in-center dialysis for six to eight hours three days a week. Currently, I do six hours of extended-hour treatments three days a week.
Did you have to quit work when you started to dialyze?
I was a special education teacher when I started dialysis. I taught the severely handicapped population at the high school level. I asked my school district to reassign me as a resource specialist at a middle school, and they agreed to change my position. I was off work on November first, and I went back in my new position on January fifth.
I was teaching full time. (I taught language arts and math and reading classes.) And I was raising two teenage daughters and attending college classes to obtain two more special education credentials. I was tired all the time and was not happy. I changed my dialysis to nocturnal sessions, and it made such a difference. I had more energy and my sense of humor returned.
I worked 15 more years as a 6th grade resource specialist special education teacher. I retired at the end of the 2012-2013 school year.
I have been married for 33 years and my daughters are now in their 30s. I also have a granddaughter who is almost three. I do extended sessions now because my center cancelled its nocturnal sessions due to staffing issues.
Has dialysis stopped you from traveling?
No. I love to travel and see new sites, and by planning, I can travel anywhere in the United States. I call the Fresenius travel site and tell them where and when I want to go and check in with them regularly.
Plan early! A few places have wait lists for dialysis vacations. Hawaii is one. I have been to San Diego, Oceanside, Big Bear, Pismo, Windsor – all in California. I’ve also been to Williamsburg, Virginia; Bellevue, Washington; Milwaukee, Wisconsin; Tucson, Arizona; Norman, Oklahoma; and Hawaii. I am making plans to go to Washington D.C., Florida, and back to Oklahoma. I get a handicap hotel room and rent a scooter to get around in large cities, where I like to visit museums and zoos.
What have you learned about the dialysis diet over 20 years?
I can eat pretty much anything I want, if I balance my diet. I used the charts in the back of the book I received in my welcome packet when I first started on dialysis, but I have learned the “art of cheating.” I know what I am not supposed to eat, but there are ways around almost everything. The only absolute no-no I know of is starfruit.
What about fluid restrictions?
I battle the fluid restriction demons daily. I eat a lot of ice and stay away from water bottles. I have one real drink a day with ice, and I drink it slowly over several hours.
What about the possibility of transplant?
Two years ago, I began testing for a transplant but stopped when additional surgeries were indicated. A second time, I went all the way through to the last appointment before learning I was not a transplant candidate due to low blood pressure issues. Disappointment and depression set in. I had to accept being on dialysis for the rest of my life. To address my feelings, I started a blog: Lifenotonthelist.com. My goal this year is to blog a little each day.
What advice do you have for anyone on dialysis?
Be your team leader. Do what is best for you. Go to every treatment, whether you feel like it or not, and try to stay for the full treatment time. I have not missed one treatment unless it was because I was hospitalized.
If dialysis makes you feel tired, extend your time or change your dialysis mode. Talk to your medical and dialysis teams and change what does not work for you; you can always change back.
Find a support group, whether online or at your center. Talk to others who are on dialysis.
On the days you feel you cannot stand it anymore, take it one second, one minute, one step at a time.
What resources do you use regularly?
RSNhope.org (the website you are on!) is a great site for dialysis patients seeking transplants. The organization hosts the Renal Teen Prom each year and also holds annual informational meetings for patients.
Ihatedialysis.com forums and Facebook. I was one of the early members and now I am an administrator on the site. We have an annual reunion in Las Vegas, plus a holiday gift exchange.
Home Dialysis Central is a Facebook group for patients doing home dialysis. The active group hosts annual patient meetings.
The National Kidney Foundation of Southern California
Chronically Happy, by Lori Hartwell. It is filled with good ideas.
When Your Kidneys Fail. A Handbook for Patients and Their Families by Mickie Hall Faris, M.P.H, M.B.A.
Living Well on Dialysis, the National Kidney Foundation Cookbook
Kidney Friendly Comfort Foods from Shire-Canadian Company
Cooking for David, by Sara Colman RD, CDE and Dorothy Gordon BS, RN
Truly Tasty is a compilation by Valerie Twomey of Irish chef recipes for patients with Kidney Disease
Katherine Soto lives in Rialto, CA with her husband Victor. They have been married for thirty-three years. They currently have a cat and a dog who mooch off them. They raised two daughters who are leading happy lives. They have one granddaughter who is almost three and is a light in their lives. Katherine is a retired special education teacher. She taught for over twenty years, most of them at the 6th grade level. Katherine enjoys writing, reading, traveling, and antiquing. She has a blog that ls about bits and pieces of her life: lifenotonthelist.com.
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