Inspiring Patients Who Inspire Us

How Much Fluid is in My Food?

Geraldine's Story

Beth's Story

Interviews with Dialysis Patients

An Interview with Amada

Inspiring Patients Who Inspire Us
Anastasia Korbitz

There’s a whole lot of inspiration to be found at Wisconsin Dialysis. Sometimes we can get bogged down in the day to day troubles that come up in dialysis: clotted accesses, unstable blood pressure, hospital stays, depression and illness. We forget to, recognize all the patients who consistently do so well. There are many who are active in their communities and with their families and those who are students or hold full-time jobs. The goal of dialysis is to give a quality-of-life to patients and most make good use of the better health dialysis has given them.

Let’s face it - most dialysis patients do quite well IN SPITE of chronic illness. They experience the same joys and pains that everyone must face. Being on dialysis doesn’t mean they ARE dialysis. It really means that because of dialysis patients can participate in all the excitement and frustrations that life can bring.

In the fall, I usually like to use the Pathways newsletter to focus on patient’s successes and allow patients to share their ideas and accomplishments with each other and with the staff. I am pleased that Geraldine Reed and Beth Sever are patients who were willing to talk about their own lives. Then I asked each patient to express their life joys.

We can all learn something from others. Our mentors could be our parents, grandparents, pastors, aunts, uncles, friends and we can learn from others who have gone down similar paths to ourselves.

So I am hoping for patients who read these sincere stories of accomplishment and happiness from those similar to themselves, that every patient might feel inspired in some way or want to reflect upon or share their personal stories too. And I am hoping that as staff read these amazing remarks written by amazing people, they will be inspired too.            

Everyone - yes, everyone - has some stress or barriers in their lives, and personal problems or worries that inflict emotional pain. This is simply part of living and experiencing life. It truly is what you do with this stress that matters. So use this time to reflect upon your own attitude about life’s setbacks, and if you want to change your outlook, do it.           

As you can read here, so many great people are coping so well with their kidney disease everyday.

How Much Fluid is in My Food
Annie Tsang, Dietetic Intern

Did you know we can consume up to one quart of fluid per day just from eating foods alone? Managing fluids is definitely more difficult when you have to adhere to a renal diet. And living in very humid and warm climates can make trying to avoid fluid intake even harder to manage.

To make your fluid management a little easier, take a look at the following menu. This chart provides the percentage of water in foods. Believe it or not, our food intake alone can add to our "fluid intake." The sample menu below adds up to 35 ounces per day! However, we don't encourage you to avoid these nutritious foods that give you the protein and energy you need. Instead, just be careful when you consider your overall fluid intake.

Data Source:  USDA Nutrient Database:  www.nal.usda.gov/fnic/foodcomp/search/

nd remember, most people on dialysis are supposed to keep fluids to either four cups per day (32 ounces) or six cups per day (48 ounces). So the next time you notice weight gains and think you did not drink a lot of obvious fluids, take a look at this chart and maybe you will see why.

You can also meet with your dietitian, who can help you sort our where your extra fluids are coming from. Food should be enjoyed, but just like everything else in life, all in moderation.

Geraldine's Story

Geraldine has been a dialysis patient for more than four years. Along with all her other accomplishments, she remains a WDI peer educator, helping new patients learn about dialysis. We appreciate all Geraldine does to support patients and families.

Hello my name is Geraldine Reed. I am 89 years old. I am an evacuee from New Orleans, Louisiana. I evacuated with my two daughters before Hurricane Katrina hit the city. We came to Wisconsin because my son was here. He came to Wisconsin attend graduate school in 1971 and liked Madison so he never left. When we realized that we had nothing to go back to in New Orleans, my son suggested that we come to Wisconsin. It turned out to have been the best for us.

I needed a nephrologist and that is when I met Dr. Alex. When I went for my first appointment we discussed my medical history and I had lab work drawn. On my follow-up appointment for the results Dr. Alex explained that I would have to go on the dialysis machine in the future and that he would like me to have a fistula put in my arm. He said there was no rush. I expressed, "Why wait? Let's do it now and it would be done."

So, he scheduled the procedure. At this appointment we also discussed the importance of completing each treatment, not to cut my treatment short, and the importance of not missing a treatment. Also, an appointment was scheduled with the dietitian and we discussed my diet and water intake.

By having the fistula placed in my arm it had a chance to mature for one and one-half years before starting dialysis treatment. When I first started on the machine I was on it for four hours, but by following my diet and water intake I am now on the machine for only two and one-half hours. I also exercise and ride a stationary bike daily. If I was not on dialysis I could possibly be dead.

I like talking to new patients that come to the clinic and letting them know that dialysis is not the end. I tell them that if they follow their diet, exercise, watch their water intake, and keep a positive mental attitude that they can still have a fulfilling life. I look forward to coming to my treatment on Tuesday, Thursday and Saturday and visiting my friends in the clinic.

I lead a very active life. I have been a housewife all my life. I live with one of my daughters and I still do all the cleaning, laundry, cooking and baking. I love to travel, go to the casino, listen to music, and dance every chance I get. I am in the process of writing a book of my life. I have three children, four grandchildren, four great grandchildren and four generation of nieces and nephews.

Beth's Story: Beginning Again

Beth is an in-center hemodialysis patient.

My name is Beth, and this is my story. I have Microscopic Polyangitis (MPA), one of several forms of vasculitis. Only 16 out of a million have this disease. Symptoms associated with MPA can affect many of the body’s organ systems, including the kidneys, nervous system, skin and lungs. I was diagnosed with MPA when I was 10 years old. I received a kidney from my brother in 1984.

The next time I was hospitalized for my disease occurred on June 5th, 2010. I was admitted after coughing up blood overnight. I spent almost three months in the hospital, including eight weeks in ICU. I received over 200 units of blood. During my hospital stay I lost my 27-year-old transplanted kidney and started dialysis. It is not a summer I would like to repeat.

To most of the patients at WDI I am pretty new, having only been on dialysis a little over year now. When I first started at WDI, I came in a wheelchair. I was very weak and my feet were so swollen I couldn’t get my shoes on. I was not sure what to expect from what I was about to take on.

On my first day of dialysis I came in and was brought to my seat.  Within minutes I was introduced to the technician, dietitian and social worker. Soon Deb Krembs, the nurse practitioner, walked over to greet me. She said, “Don’t worry. We will have you feeling great in no time.”

“Right, like that’s going to happen,” I said.

I didn’t think I was ever going to feel good again. I wanted to be able to do all the things I used to do like spending time with my husband of almost 28 years and our two sons, Will and Andrew, walking the dogs and gardening. I didn’t think I would ever be able to do any of that again. But Deb was right. After a couple of weeks I was stronger and feeling great. Soon I was back in the garden and walking the dogs with the boys. I have even cleaned out my closets. I am having a great life even on dialysis.

I recently changed my dialysis time. One of my new podmates came in on my first day and said, “Smile, you have to be here anyway. You might as well make the best of it.”

I thought, "Wow! Now that is someone who has a great outlook.  She smiles every day at dialysis.  I hope I can project that kind of attitude in everything I do."

Interviews with Dialysis Patients

Once a year we like to ask dialysis patients to answer a question. This year the question was, “What is an activity you really enjoy or what in your life brings you joy?”

Here are the responses:

Olivia: “Wow, well to say being alive to even talk about my activities and joys is number one. It also brings me joy to watch my three children grow up to be wonderful people. Spending time with family and friends, watch movies and go on trips, etc. Life is what you make of it and being on dialysis has brought me closer to my joys of life. Without it (dialysis) my joys would be full of sadness. Thanks to all that make my activities and joys come true each day. Thanks for the strength and faith that goes with each day.”

Marilyn: “My grandson, William, who is 2-½, brings a lot of joy into my life. He is a happy little boy and is a delight to be around. He likes music, puzzles, "Sesame Street," elephants, jumping and reading stories. When he comes to visit my husband and me, we find lots of things to do. He can be content playing catch with a ball, going to the library or just exploring our house. We sometimes go to Vilas Zoo or the Madison Children’s Museum. When I was in the hospital just starting dialysis this summer, William came to visit me with his dad (our son). He totally brightened up my day and my hospital room with his cheery smile and enthusiasm. He told me to get better and I gladly took his advice. I now have dialysis at the center three mornings per week but still have time to spend with the joy of my life, my grandson.”

Matt: “I like to get on e-Bay and look for old Oscar Mayer collectibles and to read and study what to invest in. I enjoy taking my neighbor, who is in her mid-80s, to the grocery store or anywhere else she needs to go. I like to help my parents around the house so they can enjoy their retirement, volunteer to help anyone in need, clean or answer the phone at my church. I like walking through flower gardens or along a beach and listen to the waves and watch colorful birds fly around or take a road trip to a scenic or historic place within the state or the U.S. Most of all, I do not like to sit and waste my time watching TV or sleeping in. God has a beautiful world for us to enjoy seeing, tasting, touching and hearing. It’s just up to us to take advantage of so many wonderful things in life.”

Mabel: “An activity I have really enjoyed is golf. My husband and I played for years and we spent winters in Alabama where we enjoyed golf.”

Judy: “The main thing in my life that brings me joy is being able to live each day and being able to spend each day with my husband and with my two children, Joshua and Jessica. I also enjoy spending time with my sister Beth, my brother Bob, and my mother Sally, who is 84 years old. My father passed away in 1998, but he taught me the importance of family and how they would bring me much more joy than material things.”

Jim: “My dog and taking care of my houseplants brings me joy.”

Lloyd: “Gardening and maintaining the yard! I also enjoy my church connections as a trustee, cooking special dishes for friends and family, being with Mary and our two cats, Snowshoe and Fernando, working and talking with future dialysis patients.”

Wendy: “My 5-year-old daughter is my joy and reason for everything. I have recently learned to truly enjoy exercising at Harbor Athletic Club and swimming. I taught my little girl to swim this summer and now I call her my little fishy. I also have reconnected with a lot of friends through Facebook.”

Allen: “How I got to where I am today. I asked the spirit of God to forgive me of my sins. I asked God to remove the stones from my heart and give me a heart of flesh. I asked God to give me joy, peace, patience, kindness, goodness and self-control.”

Geraldine: “The most important thing I really enjoy is coming to the clinic for my dialysis treatment and watching my diet and my water intake and exercising. I love to dance, travel, go to church and the casino. I love to be around my children, grandchildren and great-grandchildren. I love the life I live. I go to listen to jazz music and anytime I can get a chance to dance, I am on the floor. I am grateful to have a son who takes me to breakfast and have three loving and caring daughters. I am so glad to be alive and when I come to the clinic on Tuesday, Thursday and Saturday, I feel like I am coming to visit my extended family.”

Larry: “I enjoy auction sales. I enjoy going to my shop. I am proud of all I’ve accomplished. I started an auto repair shop from scratch out of my home. I outgrew that space because there were too many people coming to the house, so I started a shop of my own. Then I bought a larger shop which is still in business and has expanded. We now have an auto parts store and we’ve been doing auto repair for 45 years and 25 years with the auto parts store! Knowing I did all this from scratch brings me joy.”

Allen (and Linda): “I enjoy going to the mall and watching all the people and especially watching the children play in the play area. I love life and enjoy others energy through my eyes! I also enjoy going for strolls and feeling the warmth of the sun on my face. And last, but definitely not least, watching basketball (on TV). The Lakers are my favorite team, so I really enjoy if they are playing good and especially when they are winning.”

An Interview with Amada

How long have you been on dialysis?

Amada: I have been on dialysis for 6 years.

What caused your kidney failure?

Amada: I have had diabetes for 37 years and one day my doctor took a blood test and said my kidneys didn’t work and I would need dialysis. I wasn’t nervous about starting. I knew what it was about because my husband was on dialysis.

Why do you think it’s important to attend all your dialysis treatment?

Amada: If we don’t come for our treatments we will die.

What helps you keep a good attitude about dialysis?

Amada: I learned about having a good attitude from my Daddy. I like to have a good attitude and I like to help other patients too.

What would you tell others who are having difficulty with compliance with dialysis?

Amada: They should come to their treatment every time. It’s really not that hard to come to dialysis. When we are in the waiting room, it’s like a family. We all look forward to seeing each other. I helped raise my 12 brothers and sisters because I was the oldest and I started working in the fields at age 11 picking asparagus and corn, now that was hard work.

Entrevista con Amada L (Español)

¿Cuanto tiempo usted ha estado en diálisis?

Amada: He estado en la diálisis por 6 años.

¿Qué causó su falta de riñón?

Amada: He tenido diabetes por 37 años y Un día mi doctor tomó un análisis de sangre y dijo que mis riñones no trabajaron y necesitaría diálisis. No estaba nervioso sobre comenzar. Sabía cuáles era alrededor porque mi marido estaba en dialysis.

¿Por qué usted lo piensa es importante atender a todo su tratamiento de diálisis?

Amada: Si no venimos para nuestros tratamientos moriremos.

¿Qué le ayuda a guardar una buena actitud sobre diálisis?

Amada: Aprendí sobre tener una buena actitud de mi papá. Tengo gusto de tener una buena actitud y tengo gusto de ayudar a otros pacientes también.

¿Qué usted diría a otros que están teniendo dificultad con conformidad con diálisis?