Try Being in My Shoes

Dialysis and Travel, You Can Do It!

Travel: It's Good For You

Attitude

Dave

I Prefer In-Center Homodialysis Treatment Because...

I Prefer In-Home Dialysis As My Treatment of Choice Because...

Everything I Learned in Life I Learned from Sickness

Try Being in My Shoes
Anastasia Korbitz, Editor

Sometimes the best advice comes directly from those who live with the same struggles. That’s the very reason that some people join support groups. At times nothing can replace the feeling of being heard and understood by someone who is walking in shoes that are similar in size, shape and style as our own..

The same is true for dialysis patients. The WDI staff has all kinds of advice for you “drink less fluids,” “attend all your treatments,” “avoid bananas,” “take your medication.” Although the WDI staff cares about you and your health, it can get old hearing from staff.

So once a year I ask all of you, our wonderful WDI patients, to share your wisdom, ideas, frustrations and goals with each other.  Sometimes it is just more helpful to hear from someone who is quite familiar with being in your shoes.

In this edition you will hear from patients who have successfully traveled. You will read from fellow patients who maintain a positive attitude in spite of needing dialysis. You will also meet a patient who has overcome his own struggles to emerge a stronger, healthier and happier person.

You will also read opinions from patients as to the reason they decided upon a certain modality for their treatment.

I would like to take this opportunity to thank all the patients who have taken the time to write articles about their experiences. Thank you for your willingness to share your wisdom and talk about your experiences of loss and learning. The WDI staff is grateful to learn from your stories as well.

WDI staff doesn’t necessarily know what it’s like to walk around in your shoes, but we want to understand and we appreciate your sharing with each other and with us.

Dialysis and Travel, You Can Do It!
By Doncell Scales, HD Patient

My name is Doncell Scales, and this is my second time on dialysis.

When I first started dialysis I was afraid to travel and I thought that I couldn’t get the times I needed to enjoy my vacation.  When I had been on dialysis for three or four years, I decided to try it out.  I went to Dallas, TX and I got the time I needed to enjoy the things I wanted to do.  The next time I went to Kansas City, MO. I got an early Saturday appointment, and I was able to go fishing afterwards.  Now I don’t have a problem asking Kris to help me schedule an appointment out of town. I go to Chicago regularly.  So if you are having doubts about traveling, give it a try you’ll be surprised on what you’ve been missing.

Travel, It's Good for You
By Pat, HD Patient

I would like to urge hemo patients to consider travel. One can see family and friends unable to travel. Whether you’re alone or with companions, a change in your daily routine offers you the chance for mental, emotional and spiritual renewal.       

If you plan well in advance you will be more likely to get convenient dialysis arrangements. If your proposed visit involves a popular destination or time, get your travel request in early January.

I prefer to use a small camper as it can be packed well ahead of departure; I don’t have to worry about luggage, TSA screener, canceled reservations and similar problems. Many full

service campgrounds and public grounds will offer electrical and water, as much or as little activity as you wish. Most accept pets. The best part of travel is the recovery of a portion of the pre-chronic disease sense of self, an independent functioning adult. You may not be able to do everything you once did, such as eating whatever you wish. I think you will be pleasantly surprised at how many rewards remain and new options present themselves. Dialysis can be overwhelming, but kept in perspective it becomes only one portion of your life, not its definition.

Travel is very much doable, and well-worth the amount of planning and paperwork. Regular breaks can go a long way to relieving the inherent stresses of long term health issues.

Attitude
By Randell Weinbrenner, HD Patient

The definition in the Webster Dictionary 1973 edition-“A feeling or and an emotion toward a fact or a state”. This is a fairly simple definition for something I feel is so important in our daily lives and especially for those of us on dialysis.

I look at the way I felt when I was told I should go on dialysis. I thought it might happen, but I don’t know if I was really ready for it. Thinking back (and I’ve only been doing this for almost 3 years) I remember having a lot of apprehension and a definite lack of knowledge. But I did know that a good attitude would be important to get through it if I was going to be successful with dialysis.   There are other important components for being a successful dialysis patient; listening to your doctors, getting the education, following your diet and fluids, but if your attitude is not positive, your chances of success on dialysis could decrease, if nothing else, you will be miserable.

How can you improve your attitude? Being active can help. When I say active I don’t necessarily mean physically, like most people think right away, what I mean first is mentally active. I believe that if you keep your mind active with reading, playing games, hobbies or conversing with others, your attitude is likely to improve.

Another way of improving your attitude is being spiritual. Spirituality might mean religion to most people, but it could mean many things like meditation, walking in a park, listening to nice music. As I have said in a previous article, I believe in a higher power and prayer, but do whatever you feel connects you to your spiritual self. This will help improve your attitude.

I do a lot of reading and I love to write.  I just read a book called The 7 Habits of Highly Effective People by Stephen R. Carey. In this book the author talks about many people who have come up against great odds and prevailed. You could read it too and become inspired by these stories.

I found that when I faced a highly complex situation with my own health, and that I couldn’t hope to change my kidneys, I could arm myself with the necessary psychological, intellectual and spiritual tools.  Through my own contemplation about my kidney disease and listening to my intellectual and spiritual self I realized that if I didn’t change the very fabric of my thought about dialysis, I would never be able to change the reality, and therefore, will never make progress and make peace with the need for dialysis. What I am saying here, is that you may not be able to change that you have kidney disease, but you can change your attitude about it. Real change in attitude comes from the inside and shows itself on the outside.

Emerson says “That which we persist in doing becomes easier, not that the nature of the task has changed, but our ability to do has increased”.

In doing dialysis stay the course, learn all you can about it and be involved in your care, but most of all keep a positive attitude. Good Luck and God Bless.

My Name is Dave
By David J, Hemodialysis Patient

If you read no further, that is all you will know of me. I was born a happy and joyous child, however I have no conscious memory of that.  My only references are that of my mother’s accounts of my early life. My first conscious memories were at age four or five; I was curled up in a ball on my bedroom floor, shaking in fear and terror listening to my drunken father yelling at my mother.  I was raised on a diet of this.  It is my belief that we are all born with a happy and joyous spirit.  But I believe mine was darkened at a very early age, so much so, that I did not know that I had a spirit.

I became an insulin-dependent diabetic at age 11 and had my first beer at age fourteen and noticed that it did something for me and to me.  As a teenager, I always felt like I was under pressure, had a feeling of foreboding and fear about something...I didn’t know what.  However I noticed that alcohol dispatched these feelings.  At age 15, I was in a 2-car accident, and both vehicles were totaled.  Consequences from alcohol and street-drug use were common for me.  I seem to fit the family scapegoat role very well.

After graduating from high school, I went to city college and obtained a 2-year associate degree in mechanical engineering. I was good at it and quickly became employed.  I lost my engineering job because of drinking and chronic tardiness.  I obtained a second engineering job and lost that due to drinking as well. Restaurants were easy places of employment for me, and I could drink on the job.   I cooked in many restaurants often leaving just before I was fired due to my drinking.  Periodically, while I was in my twenties, I quit drinking for months at a time due to various consequences.  This only fostered my denial; I told myself that if I was an alcoholic, I obviously couldn’t stop drinking for months at a time. I now know this to be a half-truth at best.

Because alcoholism is a chronic, progressive illness, it’s easy to stop drinking in the early stage of alcoholism.  However, middle to late stage alcoholism physical dependency is present and it’s much more difficult to have a period of abstinence.

I lost my eyesight at about age 26, primarily due to drinking with diabetes.  As a blind person, I felt terribly insecure, unsafe and threatened.  My drinking increased to cope with these fears.  By age 27, I was experiencing renal failure.  In the early ‘80s, dialysis was a lot different than it is now.  I was chronically sick, vomiting constantly, and losing weight steadily.  After about 6 months of dialysis, my weight went down to 115 pounds.  I knew I had very little time left to live and so, apparently, did my mother.  She volunteered to donate one of her kidneys to me.  It was a very good match and it started working flawlessly right away. 

At this point in my life, I was convinced I was an alcoholic.  Again, I had periods of abstinence, lasting from several weeks to several years at a time. Finally, at age 32, I was at my crossroads, or as some recovering people call it, my “moment of clarity and truth”.  I signed myself into Kettle Moraine Treatment Center, where I remained in-patient for 30 days.  From there I went to a 3 month half-way house program in Waukesha.  I began to understand that my problems only looked like they came from drinking, when actually I have a day-to-day living problem, and the solution to those problems would be drinking. As a newly sober person, I saw what alcohol did to my life and became a very angry, sober person.  I remember my counselor telling me that I was a stubborn man, so I turned that trait into a positive and told myself come hell or high water I was not ever drinking again.  Anger and resentments permeated my life for a number of my early years in AA. I found out that a big part of AA is clearing out wreckage of the past.

I later found out that if this wreckage is not removed, it interferes with or blocks my contact with my Creator. I also discovered that strong emotions like anger, sadness, envy, etc. interfere with my conscious contact with my Creator as well.

Six months into recovery I started attending massage therapy school, graduated and worked as a massage therapist for several years.  I developed carpal tunnel syndrome in both my hands, had surgery and the doctor suggested that I do something else for a living.  So I went through Kettle Moraine’s counselor training program, did nine months of clinical counseling at a women’s half-way house, then became certified and was employed as an AODA rehabilitation counselor at an outpatient clinic for 10 years.  In 2000, I had open heart surgery and a triple bypass and met my wife at about the same time.  Since I worked a lot of evening and weekend hours, and this was quality time I wanted to spend with my wife, I wanted to retire.

I stay as active in the program of AA as my health permits these days. I use meditation to quiet my mind and, in this way, the spirit within can be in direct contact with my Creator. I also use weekly and daily tune-ups like positive affirmations, being grateful for the things I have instead of the things I have not, and attending 3-4 AA meetings per week. I recently picked up my 21 year Clean and Serene AA birthday chip. My hope is that I can help another addict/alcoholic to be free of active addiction.

I Prefer In-Center Hemodialysis Treatment Because...

Here’s what the patient’s have to say…

Eugene: “I feel more secure, and I have confidence in the staff here. I live alone and have no one to assist me with home dialysis. Also I like the camaraderie of the other patients. This is like a small family. I have gotten to know some of the people quite well.”

Clayton: “While the in-center is a medical procedure, I found it is also a social place. I have met and befriended many interesting people. The man next to me for the last two years became a great friend. He recently died and I miss him very much. Perhaps a new patient will come along and take his place.”

Harvey: “Because I get better care and because (coming to the clinic) keeps me healthy. If I were trying to do all this at home I would have been dead a long time ago.”

Dionne: “Because it (in-center HD) is very convenient. I was on PD dialysis and that was supposed to be convenient, but it wasn’t. I could be somewhere doing something and would have to leave to go complete a PD treatment. With in-center HD you come in, get your treatment and continue on with your day.”

Randell: “The staff members at Wisconsin Dialysis are so friendly and they make me feel great even though doing dialysis may look cumbersome. Also, I’ve traveled to other facilities and it does not cause much inconvenience and the service has been excellent. In-center hemodialysis gives you a good support group which meets your every need from doctors, nurses, secretaries, dietitians and social workers and others.”

Helen: “It gives me a warm, fuzzy feeling to be here. The staff takes care of me and cares about me. June 22 is my 9th year anniversary on dialysis, and in all that time I have only missed twice – due to severe stomach flu.”

Alex: “Because I feel content. The staff takes good care of me.”

Allen: “I love the sensitivity of the nurses and the kidney techs are so good to me. I love the freedom of watching cable TV, or working on my computer, or taking a nap. I truly love the people who work at dialysis because they are so friendly and kind. I praise my God and  offer prayers to the Lord for all the workers at dialysis.”

Gary: “I love all the staff members. I cannot see good enough to put my own needles in, so I have the staff do my cares for me. I just like coming here- the staff are so friendly.”

Bonnie: “I love getting up early and getting my treatment over with. All the nurses are very nice; especially the ones who take care of me a lot: Jill, Jan and Debbie. These girls are very comical. After treatment I get to be out and about.”

I Prefer In-Home Dialysis As My Treatment Choice Because...

Here is what the home patients have to say…

Dee: “In home allows me to live a very normal life without having to worry about fitting my dialysis. It also allows me to be in control of my own healthcare. Besides dialyzing with my puppy nearby and watching American Idol, I get to be in my own bed which is WAY more comfortable!”

Earnestine: “We can set our own days and times when we want to do our home dialysis. No trekking to in-centers in the winter. We have a travel trailer and do our dialysis in it as we travel all over the country. We have a lot more free time to do other things than just dialysis and have a lot less time to have to commit to dialysis.”

Anonymous: “I can do my (dialysis) prescription at my convenience at home.”

Sabine: “It’s hard to believe that it’s been almost a year since we understood the challenge of home hemodialysis. While going through the training we almost convinced ourselves we were in over our heads. The flexibility we now experience made every trail and tribulation worth it. We have two fabulous trips to Florida and camping in northern Wisconsin under our belts and thought we were once very cautious we are presently planner a trip to Glacier National Park later in the summer. We humans are truly limited by our own lack of vision. If we can imagine it we can adapt to it. For us home hemodialysis presented a vision of the future we wanted and are willing to achieve. We will enjoy it for as long as we can.”

Dr. Bradley: “Home dialysis more closely mimics the normal renal function. Being able to do dialysis daily for 3 versus dialysis every other day for 5 hours, for me has proven to be a much healthier alternative. My energy level, skin and monthly labs have all benefited from home hemodialysis.”

Ron: “It allowed me to retain my full time job with the utility company. I can also administer protein and antibiotics in my solution as needed.  It also allowed my family to go on vacation with taking my dialyzer and supplies and by calling Fresenius to have (dialysis) materials delivered to a specific location. Instructions were easy to get started at home. I would highly recommend this process.”

Everything I Learned in Life I Learned From Sickness
By Dee Her, PD Patient

I recently had the privilege to attend the graduation ceremony of one of my younger brothers as he finished college.  It was a thrill to watch as hundreds of young people stepped up to the podium in their black gowns and yellow tassels. 

Slowly, but surely, each one of them would reach out and accept a small black folder and then despite the Swine flu scare, would reach out to shake the hand of the ever-aging chancellor.  As each young person stepped forward, I couldn’t think of a moment in which I was more proud of my brother for having accomplished so much in the past few years. 

It meant so much to me to have been allowed to share in that very short but intimate moment.  I wasn’t there when he graduated from high school.  In fact, I was busy that Friday night as I was hooked up to a dialysis machine miles away from where he was celebrating the end of one milestone and commencing the start of another. 

It was also in this moment of celebration that I had the opportunity to reflect on how different my life would’ve turned out if I was in “good condition.”  In fact, I would’ve graduated college early and I probably would’ve finished graduate school as well.  I’d have 2.35 kids and a guinea pig named Zobo who would turn circles on command for treats.  I would live in a nice little house on X Street in the middle of a bustling suburban community with a nice yard and flowers and pink flowers,  lots of pink flowers. 

But my life didn’t turn out that way.  In fact, many would say that my life didn’t turn out like it was planned at all.  Robert Burns so candidly wrote “The best laid schemes of Mice and Men oft go awry, and leave us nothing but grief and pain.”  I must disagree. 

In fact, my life has turned out better than I could’ve ever expected it to be.

When I see where I have been in my life, I cannot apologize for all of that which has happened to me.  My sickness has taught me many life lessons that I would never have been able to learn elsewhere.  Perhaps the most important lesson that I have learned is the value of one’s life. 

In the ten years that I have been fighting renal failure, there have been many moments in which I have wondered if my life was worth fighting for, especially when it just feels as if it is always an uphill climb.  It just doesn’t seem possible that any one body can go through so much and still want to survive for more. 

I once had a friend tell me that struggling through such hardships would build a strong character.  I have only to hope that it is a character filled with integrity and good faith. 

Now that I have had the chance to look back on my own life, I’ve learned that there is nothing better than to be alive at this very moment.  Indeed, I must be quite fortunate to still be an active participant in my own being. 

I woke up this morning to a sunny 75 degrees and slight breeze with a 35% chance of afternoon showers.  It was perfect.  With days like this to look forward to, how can I not be happy? 

I can’t wait to have another laugh, enjoy another episode of American Idol, and have one more bite of carrot cake.  I would never want to wish a sickness on even my worst enemy, but I wouldn’t trade this experience for anything else.  It is through this physical burden that I have learned to love, smile and appreciate all of the little things that make survival worth the hardships.  Death could’ve taken me a long time ago but look where I am now.  I have another birthday this summer. 

Maybe I’ll go skydiving.