Dialysis: Like a Box of Crayons!
The Value of Luck and a Positive Attitude: Lessons Learned from Chair 13
Viva la France! A Dialysis Patient Takes an Overseas Vacation
Life Lessons
Dietary Restrictions: What’s a Fella to Do?
Dialysis: Remember, It Saves Your Life
Coping Well: A Day in the Dialysis Unit
What Helps Me Cope with Dialysis is….

Dialysis: Like a Box of Crayons!

Anastasia Korbitz, Editor

“We could learn a lot from crayons; some are sharp, some are pretty, some are dull, while others bright, some have weird names, but they all have learned to live together in the same box.”

What a prefect quote to introduce the summer edition of the Pathways newsletter. Just like that box of crayons, we are all so unique. Different and unique as we all may be, we manage to make this big “box” known as WDI work for all of us, and we seem to find a way to get along, amazing!

Patients and I have talked about how remarkable this really is. How can it be that you can put a large group of people together, all colors, all ages, all personalities and abilities in one room and have things run ever so smoothly? We have had some rough patches, but in general, we have all gotten along like a giant box of crayons. It certainly is a testament to the staff, patients and families. But, we all don’t just get along. We learn from and support one another too.

You can see this effect so clearly in all of you. Think about it, in any other circumstance, would you have ever had the chance to get to know the person who sits next to you or the person you visit in the waiting-room?  No doubt about it, you are here for your own health. However, without even knowing it, you are interacting with other crayons and adding to your box of colors! The Violet is supporting Magenta, the Atomic Tangerine is learning from the Aquamarine and the Chartreuse is being a good role model for the Burnt Orange!

In the real world, maybe we like to stick with those who are similar to us. You know, stay close to the blue crayons, only play with  red crayons, or go to church with orange crayons, but at WDI you have the chance to meet all sorts of crayons!

So, since you all seem to be open to all the possible crayon varieties, I thought it would be fun for you to hear from each other about this big box known as WDI and dialysis. So go for it, color your world in vibrant hues by learning from others who have different shades who are quite different, but so similar too.

After this page, the articles are written by WDI patients. Thanks to all of you who contributed!

Through sharing with each other, your individual colors will make the most beautiful rainbow of experiences. Learn from and support one another. Hey, didn’t your mom always tell you to share your box of crayons with others anyway?

The Value of Luck and a Positive Attitude: Lessons Learned from Chair 13

Randell Weinbrenner

On April 15th I had the pleasure of attending the Spring Future Lifestyles Show at the Alliant Energy Center in Madison. My being able to attend was made possible by the staff at Wisconsin Dialysis going beyond the duty and changing my dialysis schedule. I want to thank Wisconsin Dialysis for making it possible for me to attend.

Secondly, I want to thank my workplace: First Student, for allowing me the time off on Monday afternoon to attend my dialysis treatment on a different day.

Now it’s time to tell you why I went to the Future Lifestyles Show. The first speaker was a gentleman by the name of Kurt Unterholzer who spoke on the topic “My Medal Winning Kidney.” During his talk, Kurt explained that he got a kidney transplant from his brother in 1981 (if you do the math that was 27 years ago). This is pretty amazing in its own right and very good news for anyone who plans to get a transplant.

During Kurt’s talk, I found out that the first kidney transplant was done in 1956. It was done between a set of twins because of their close match.

Kurt’s job title at the University of Wisconsin Hospital is Organ Coordinator. He is responsible for accepting donated organs and basically making sure they are reusable for transplant (pretty important job).

You might think you have a lot of choices with kidney failure, but Kurt listed three: 1) Dialysis 2) Transplant or 3) Death. I don’t know about you, but the choice I like of these three is transplant. I am doing everything possible to make that happen for me, and I hope and pray you are too.

Kurt is 51 years old and like I said earlier, he got his kidney from his brother. Before Kurt’s transplant his kidney function was at only 5%. After Kurt’s transplant his kidney function went up to 100%!

Once Kurt had his new kidney he said he got a new lease on life, and he wanted to do things in his life he hadn’t done before. So, in 1990 he competed in an athletic event with over 400 athletes in the Transplant Games. He competed with others in his age category and WON 4 gold metals. Kurt was named the Outstanding Athlete of the Games.

In conclusion I want to say if you met Kurt you would see he looks pretty ordinary, but he has been down a path many of us, on dialysis, are just starting to go down. Kurt said that luck and desire play a big role in his success, also following doctor’s order, taking medication responsibly and as prescribed is very important. Kurt recommended you get a hobby, get into sports, exercise and have a positive attitude. Another way of saying it is learn to roll with the punches, so to speak.

Kurt also talked about the importance of making your intentions about a desire for a transplant known to your family. This may sound easy, but speaking from my own experience, this might be the toughest part. Asking someone for a kidney isn’t like asking for $5.00 for food or clothing. You’re asking for a kidney! Kurt said that his brother is doing fine since donating his kidney. Other than a small scar Kurt said his brother doesn’t seem to miss it.

Wisconsin has the highest rate of organ donation, according to Kurt and a good kidney could last 150 years!  About only 1.5% of organs are recovered so you need to understand how critical it is that you sign the back of your driver’s license to be an organ donor and have a donor sticker on the front of your driver’s license.

If you would like to talk about my experience at this conference, let me know, I am in Lucky chair 13 and my name is Randell Weinbrenner.

Viva la France! A Dialysis Patient Takes an Overseas Vacation

David K. Wright, former WDI patient

After four years as a peritoneal dialysis patient, and after a couple of domestic vacations (Hawaii and New York), I thought I would try an overseas trip. I went to Paris for eight days and succeeded in dialyzing regularly. But I had to think about what I was doing. Here’s the story.

Paris, I feel, is one of those places everyone should see. So I found a traveling partner (my younger brother) and arranged for my “juice” to be shipped to a Paris hotel. Fresenius notified me several days before I left that the meds arrived safely at the hotel.

Sure enough, when I showed up the cases of distilled water with sugar awaited me. A couple of niggling problems arose, the primary one being that the heating pad I brought could not be plugged into a  European outlet. Yes, I had a converter. No, it did not work. So I warmed the bags of water on the room radiator.

Thanks to security, we could not carry on a knife or scissors to use in opening the bags containing the fluid. I simply forgot to pack knife or scissors in my luggage. Consequently, we rolled around the hotel room floor with the bags of fluid, which were stubborn but eventually popped open.

The other problem was that I had to banish my brother to the bathroom while I hooked my catheter to the latest bag. He was nice enough not to mind. I used four two-liter bags every day but one; I used three bags on that one day and accidentally fell asleep early.

We saw all we could, walking everywhere, riding the subway everywhere else, and enjoying great sites, food, culture, and more. I carried a two-liter bag with me on the way to Paris and did an exchange when I arrived in Charles de Galle Airport.     

Returning was more complex. We landed in Newark, where I learned that my flights, to Detroit and then home to Madison, were delayed. I stood a good chance of spending the night in Newark— without any meds.

I showed a Northwest Airlines employee a letter from my doctor and he got me on a Midwest Express flight from Newark to Milwaukee. My wife met me at the baggage carousel and 90 minutes later I was home, hooked to my usual nightly dose of distilled water and sugar.

I may do this again.

Life Lessons

Dionne Howard, WDI patient

Hi, my name is Dionne Howard. I’ve been a dialysis patient for 11 years. When I first started it was hard adjusting to the different changes especially not being able to eat certain foods and having to watch my potassium and my fluid intake.

I’ve had some life threatening situations with my health and my own ups and downs, but I came through them. It was hard to learn the seriousness of my disease, but with the support of family and the dialysis staff I’m proud to say I’m enjoying life. I’m very happy and I’ve accepted my need for dialysis.

Dietary Restrictions: What’s a Fella to Do?

Phill Wechter, WDI patient

Kidney failure, OK, I was told it’s time to watch my fluid intake, I could live with that. Then I was also told I can’t eat everything I was used to, wait a minute, now the dietitian is taking the joy out of eating! When I started dialysis, my dietitian told me about all the things I should not eat. Well, I decided to beat her at that game; I decided to use my imagination and explore new foods.

I grew up with a mother who cooked in a restaurant and could make just about anything taste great. She had a love for good food and she would smile when my friends asked for second and third helpings. I learned a lot about cooking from her that is helpful to me now.

Now, I don’t have any great secrets or special training, instead I just cook in a way that makes use of good common sense. I take a recipe that I like, cross out the ingredients that are bad for me and make substitutions. Talk to your dietitian for a list of foods you can eat and use them in your recipes. You will be amazed at what you can create if you used a little creativity.

As dialysis patients, we are all traveling the same road. As we learn to cope with dietary restrictions the road may feel smooth or rocky, and once in awhile we end up in the ditch. But remember, everyday you could see someone with more courage than you can imagine. There are kids so sick it makes you want to cry, yet they smile and laugh. It reminds me that living with dietary restrictions really isn’t that bad after all.

Am I fooling myself? I sure hope so. I feel better and the people around me feel better because I am taking care of myself. Make the best out of your favorite recipe and make the best of all you have, it’s all you got. See my recipe for Sticky Chicks below. It’s kidney friendly (my dietitian approves) and it’s yummy!

Sticky Chicks

• 4 boneless skinless chicken breasts
• ¼ cup stone ground mustard
• 3 Tablespoons brown sugar
• 2 Teaspoons minced ginger
• 2 Tablespoons cilantro, finely chopped
• 2 Tablespoons honey

Place chicken in greased 9”x13” glass baking dish. In small bowl combine mustard, brown sugar, ginger, and honey. Brush half over the chicken. Cover and bake for 15-20 minutes till done at 375 degrees. Uncover and baste again. Broil for 1-2 minutes till golden. Sprinkle cilantro over chicken and serve. Feeds four.

Dialysis: Remember, It Saves Your Life

Geraldine Reed, WDI patient

Kidney dialysis is a life saving process. Years ago a lot of people died from kidney failure. I feel lucky to have a treatment, like dialysis, to keep me alive.

I have been on dialysis for ten months. I have maintained my weight with diet and exercise. When I started dialysis, I was on the machine for 4 hours, now I am on it for only 2 hours and 45 minutes. One of the reasons for this is because I take good care of myself, take my medications and follow the doctor’s orders.

I’d like to say, dialysis is not the end of life, it prolongs life and it doesn’t stop you from doing anything you want. Don’t ever look at dialysis as something that keeps you from living your life. It actually keeps you living!

In April I went on a trip for a month and in May I went on a week long trip. Both times I received my treatment in the city I was visiting. Even on dialysis I still do many of the same things I have always enjoyed such as cooking New Orleans gumbo and pralines, spending time with my family and traveling. I have even been asked to talk to new dialysis patients about my experience on dialysis.

My name is Geraldine Reed and I am 86 years old. I know that life can be hard at times. I took care of my husband until he died and my daughter when she had cancer. I even lived through Hurricane Katrina!

I think one of the best pieces of advice I can give you, and what I tell all new patients, is go to your dialysis with a positive attitude and remember it is saving your life!

Coping Well: A Day in the Dialysis Unit

Nolan Faulkner, WDI patient

Good morning! What helps me cope with dialysis? One simple answer, THE STAFF, and how well they are organized.

When you arrive at WDI there is plenty of parking space. The front door of dialysis is a short distance away.

When I go through the front door it opens automatically and than there is a wall push button to open the other door for those who need access in wheel-chairs, walkers and stretchers, no one is forgotten.

Sitting a short distance in front of the doors are two receptionists. The finest ladies you could ask for to greet you when you arrive. Terri says, “Hi Nolan” and Mary says, “Hi Nolan, how are you today?”

No fancy words, it’s like they have known you your whole life and it makes you forget how serious your condition is.

I hang up my jacket, if I have one, pass the receptionist desk to the right and continue on the weighing scales to weigh myself. One scale I can stand on and the other scale is for those confined to a wheelchair or other equipment.

As you enter the dialysis unit, the unit clerk, Jackie is monitoring those who enter and managing the front desk. There is a small table at the entrance to the right in front of Jackie’s desk where you can take your own temperature. There are small pieces of scrap paper lying in a box to write down your weight and temperature to give to the dialysis nurse assigned to you for that day.

The machine and dialysis chair are carefully cleaned and a clean sheet laid over it before you are allowed to sit. The machine is set for your particular dialysis need. Before you leave you are weighed again.

The unit is well organized and the special chair I sit in is comfortable although I put a pillow at the small of my back to prevent an aching back after sitting for 3 hours. I sleep half the time. The nurses turn the machine so I can read the panel whenever I want to. It makes me feel I have a little control. The nurses give you whatever you need to feel comfortable. I love the staff.

They are really conscientious of your needs. You people are great. I actually look forward to dialysis 3 times a week. Everyone, enjoy each day!

What Helps Me Cope with Dialysis is….

Comments from WDI patients

Phil: “There is no magic bullet, one must accept the fact that dialysis is their lifeline. My 12 hours a week is my part time job, keeping Phill alive and healthy. I try to stay upbeat even when I feel lousy and things aren’t going well. Look around, someone has it worse than you. Don’t feel sorry for yourself and keep swinging for the fence.”

Pat: “Having continuity with the same people providing my care.”

Dale: “The possibility of getting better or getting a transplant.”

Allen: “I cope with dialysis thanks to the empowerment and presence of the Holy Spirit, my faith, my religion and my trust in these three things. The Holy Spirit brings peace within me.”

Andy: “To not think about it as something you need to cope with. If you define yourself as a victim you are going to feel like a victim. It is the power of positive thinking.”

Gloria: “My family, friends and coworkers.  I cope with the help of prayer and positive thinking. It helps knowing soon my transplanted kidney will be on the way. I also watch my diet, exercise and listen to my caretakers.”

Esterline: “That I got used to it and know I have to be here. My life depends on my dialysis. I have never gotten in the habit of missing.”

Anonymous: “After awhile it becomes a routine. It’s a quiet place.”

Mary: “That I feel better afterwards.”

James: “Watching people go by and knowing that dialysis keeps me alive.”

Sunawa: “A very supportive person at home and a staff that is very good! You can tell most of them really take time to do good work and really seem to care about their patients.”

Alice: “Seeing all the friends that I have made, knowing I will be well cared for by the staff..”

Don: “What helps me cope with dialysis is the fact that this is my second time around. I received a transplant in 2000, it lasted 4 years. Before that, I was on dialysis for 5 years, so, I’ve pretty much been through everything before. I don’t have as much stress as I did before because I am not working this time around. It was hard trying to work full time plus overtime everyday and have dialysis 3 times a week.”

Dora: The friendly staff is the best part of coping with a difficult situation. Kathy, Maria, Karl, Dave, PPPPaula and many others always manage to make me feel special.”

Hal: “My wife helps me every step of the way! And the key to coping is “accepting” that you have kidney disease. Acceptance will help with the many challenges you face on a regular basis. It will enable you to look to the brighter side of your new life. And you find that you can continue to do many of the same things you always did, whether it be in work or play.”

Gary: “I just do it and I don’t have any problems with dialysis. I am an easy-going guy. I even help out with some of my dialysis treatment.”

Doug: “The highly trained and friendly staff always willing to assist with any questions.”

Mabel: Keep a regular schedule as well as possible. Drink and eat healthy within the limits, get enough rest and keep a positive attitude as much as possible.

Bill “I’m not that easy to break. I have been through Vietnam- this is nothin’ compared to that”.

Steve: “Good nurses.”

Susan: “Humor-I joke with family and co-workers about ‘going to take my afternoon nap’. The nurses and techs help too. They are always friendly and helpful.”

Joe: “First of all, I would have to say the staff helps a lot. The social workers are the best; they are patient, when you ask questions you get answers back soon. We as patients are told of everything that is going on. Also the staff makes sure their patients are comfortable as they can be. That is what helps me to cope with dialysis. Thanks to all the staff and my social worker, Anastasia.”

Larry: There is nothing I can do about it and thinking about it is too depressing, so I just ignore it”.

Joanne: “For one thing, dialysis is only 3 days a week, it’s not everyday. My family keeps me going. They keep me positive and the staff at East is great. I thought when I first started dialysis that I wouldn’t be able to do it, that it would be a real drag. Once I got used to it and realized this is something that happens I thought I could choose to be either positive or negative. I decided to be positive and just go with it! Now it’s easier. The 4 hours don’t feel that long. I can sleep or watch TV and the staff makes it comfortable.”

Sabine: “Like many dialysis patients my first few weeks were spent sitting perfectly still for my 31/2 hour run fearful that the slightest movement would set off an audible alarm. I’m sure to many of the staff I looked much like a “deer in the headlights”. Now five months later I find myself very busy and able to joke around with the amazing array of people who work with me and many days feeling too busy to do much visiting. My time is usually divided into a variety of activities. I have organized and continue to work on two “Rely for Life Teams” (American Cancer Society Fundraiser), listen to my Fighting Cancer from Within imagery CD, working out with weights, meeting with my HMO Comprehensive Medication staff person (this normally includes a therapeutic foot massage), reading, catching up on my snail mail to friends and relatives, balancing my checkbook and paying bills, latch hooking, making follow-up calls on my cell and occasionally watching a movie for TV. The one thing I never seem to have time for is a nap-I just have to save it for when I get home.”

Randell: “Positive Attitude. I drive school bus and I’m around young kids and as I watch how eager they are to go to school and again ride home. I remember when I was that age. Life deals us many ups and downs but know the key is to focus on the ups, keep busy and surround yourself with friendly, positive people.”

Mary: “The unending love and support of my family and friends. Even when I am down and at my worst my husband, Jim, never fails to be with me and hold my hand. He has missed only one dialysis session even though he could be doing many other things. My three sons are always waiting for me when I get home to tell me about their day and to make sure I’m okay. My very best friend, Cheryl, sits with me to pass the time and makes me laugh. How much more could a person ask for? I’m fairly new to dialysis and I couldn’t have made the adjustment without my sister who always makes me look at the bright side. I am so grateful to have these people in my life.”

Paul: “You can’t let the disease drive your life. If you are going to feel sorry for yourself, you are going to have a pretty miserable life.”

Kathleen: “First off it helps to be somewhat crazy. Realizing dialysis is better that the alternative and knowing that 50 years ago people with kidney failure were less fortunate. If you are a candidate for transplant, the duration of your dialysis may be more temporary than no option of transplant. All forms of dialysis have risks, but not taking risks would ensure certain death. Even though this lifestyle, with limit-ations, is sometimes hard to follow, you will feel better following guidelines and will be to your advantage in the long run. Good luck and stay positive. Remember when life gives you lemons, you make lemonade.”

Thomas: “The knowledge that if I want to continue to live, I need to follow the direction of the staff and get plenty of rest.”

Bob: “You just get used to it. It’s not too hard and it’s keeping me alive.”

Cindy: “Well, the thought that it keeps me alive is the main reason. I have things to do and miles to go before I sleep. The other thing that helps is knowing I don’t have to pay for it.”

Hugo: “Knowing that if I don’t come to treatment I will get sick.”

Salvador: “I cope with dialysis because of the treatment here and also the staff treats me well. They are always friendly and never angry.”

Emma: “I receive such wonderful care here. I have gotten so much help from the staff.”

Dominga: “Well, I think dialysis is another chance for us to live. I didn’t want to receive it and when I knew I didn’t want to receive it and when I knew I needed it I did not accepted it. I got depressed, but thanks to the advice of my family they convinced me, and here I am being strong. Now dialysis is something natural to me even though it wasn’t easy because I did not feel good not knowing English, but I now feel at home, that is how the nurses make me feel, they are nice to me. I thank God. We have to keep going and not give up.”

Brian: “Having music to listen to.”

Pat: “Taking my doggie for a walk in a dog-friendly park on one of the lakes. I recommend Gov. Nelson State Park. The park is partially wheelchair accessible. Find someplace where you can be alone just to be able to sit and appreciate things and think.”

Helen: “It’s such a part of my life. I’ve been on dialysis for 8 years.”

Deb: “If I want to live, I have to come. It saves my life.”

Adolph: “The Good Master tells me what to do. Jesus is my Master.”

Myron: “The people, staff, patients and doctors.”

George: “Before dialysis, I spent most of my day taking care of my disabled wife, cooking meals and running errands. Now I spend no less than 140 minutes per day draining and filling, and frequently more. My time “on leash” (PD machine) is spent reading the Economist Magazine mainly. It takes me a week to read it, cover to cover, and then on Saturday another arrives. In addition, I try to read the occasional military novel. I am currently reading Jeff Shaara’s novel on the American Revolution, “Rise and Rebellion.” Time (on dialysis) goes fast that way.

Charles: “The support and understanding of my family, friends and co-workers.”