Note from the Editor: Loss: How Does it Change You?
Your Diet: Are You Feeling Out of Control?
Gaining Control of Your Health with Medications
Coping with Loss: Denial
Remember the Basics When Coping With Loss
Living with Loss: A Kind of Life Training
Autumn Announcements
Coping With Loss: Guide to Grieving and Bereavement

Note from the Editor: Loss: How Does it Change You?Anastasia Korbitz, Editor

I decided that with the cool breezes of autumn upon us and with the holiday season not far behind, it would be appropriate to spend this edition of Pathways focusing on the issue of change as it pertains to loss.

With this in mind, I am reminded of a new PD patient I met. I asked her how she was coping with the need for dialysis and whether this change was difficult for her. She said, “Well, I was talking with a woman who was having a garage sale and she told me that she was selling her daughter’s belongings because her daughter and two children died in a car accident. Well, when I hear stories like that, I realize I really have nothing to complain about.”

Frankly, I was amazed at her response. Although she is experiencing her own life change, she was able to recognize significant loss for others.

I can honestly say that I don’t quite know how I would respond if I were in this young woman’s shoes, but like you, we have all experienced loss.

Loss doesn’t necessarily mean death, but certainly, it is one of the most powerful forms of loss. However, for the purposes of this newsletter, loss will be interpreted as any experience that changes who we once were.

For those of you on dialysis, you have experienced all sorts of loss. However, loss is not always a bad thing. It can be a personal growth experience too. Perhaps, like the young woman I mentioned, loss can keep one’s life in perspective. For others, loss is painful, but with time one can emerge from it.

As we welcome the autumn and the holiday season, loss experiences that we think are at bay may have a way of creeping in again. So, if we again feel our loss let us remember how it changed us and how it has helped us grow.

I hope the articles in this newsletter will be supportive and educational as you continue to cope well with and adapt to chronic illness. Perhaps we could all learn something from the young woman I mentioned or from the words of Walter Anderson:

"I am responsible. Although I may not be able to prevent the worst from happening, I am responsible for my attitude toward the inevitable misfortunes that darken life. Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have – life itself.”

Your Diet: Are You Feeling Out of Control?
Fran Kittell, RD

You come into dialysis three times a week and every time you come in the nurse or tech says you’ve gained too much weight. Stop drinking so much! Stop eating so much salt! Your doctor has other ideas. Measure your urine output. Take the medication, but not that medication. Stop smoking. The dietitian next reviews your lab report card. Lay off the tomatoes and potatoes.

WHAT’S NEXT? EVERYBODY IS TELLING YOU WHAT TO DO! ARE YOU FEELING OUT OF CONTROL?

The norm of kidney disease is change. Everything seems to hinge upon those “things” in your blood. Keep in mind, your kidney function can change your blood values. How well the kidneys clear out potassium or urea can affect what you can eat; how well you feel. Although all this change is difficult, the answer to regaining self-control is knowledge. Learn everything you can regarding your diet and your medications.

Know how your medications can effect what you can eat. A lot of medications can increase your blood potassium levels. As a result, some days you may be told to eat bananas and another day restrict your banana intake. After eating protein, such as meat or a large cheese pizza, some wastes, such as urea, can build up in your body. This can make you feel sick and tired. How well you clear fluids affects the amount of fluid your body can tolerate.

For those of you that have not started dialysis, you may not be able to completely control the progression of your kidney failure. But you may have some influence on the rate of progression and of how you feel. Many people have discovered feeling quite ill after eating a meal heavy on the meat. The build up of wastes can make a person feel nauseous and tired. Instead learn how much is safely recommended for you. Focus on eating other things, such as kidney-friendly foods, such as noodles and rice. By learning what’s best for you, you may begin to feel better.

Do you have difficulty breathing or have high blood pressure? For those of you on dialysis, limiting your sodium and fluid intake could help you feel better, have fewer headaches related to high blood pressure, nicer-looking ankles and improved breathing! Learn about how to live without salt. It can be done. It does not mean living without flavor. Herbs and spices can take the place of salt and be very flavorful. Ask your dietitian about ideas. Dietitians are armed with ideas that they would love to share. Plus, you can breathe easier and hear fewer complaints from staff telling you what to do. Learn what you can do to regain some control in your life, particularly when it comes to what you eat and drink.

What about phosphorus? By becoming aware of which foods have a lot of phosphorus, you can have better control of your blood phosphorus levels. This can free you of itchy skin, bone aches and possible bone breaks.

Have a craving for chocolate? Chocolate can be seen as the worst of foods, being high in both phosphorus and potassium. But that does not mean you have to go entirely without it. Your dietitian can be helpful in arming you with information allowing you to keep chocolate in your diet. By cutting back on other food sources high in phosphorus, and by learning about the best dose of phosphorus binder medication, chocolate can be a part of your diet, but in moderate amounts. Learn which foods are high in phosphorus. Dietitians are not food police. Use your dietitian and become armed with knowledge by learning ways favorite foods, such as chocolate, could be a part of your diet without hurting you.

By becoming more knowledgeable about food and its content, most foods, whether it be chocolate, peanuts or pickles, can find a fit in your diet without the cost of being out of control. Learn what you can safely eat from your dietitian. Regain your self-control. Use your dietitian. Knowing your dietary needs can empower you to have control with some portion of your life. This is better than no control at all, right? Knowledge does equal control!

Gaining Control of Your Health with Medications
Kim Holdener, PharmD

It is not uncommon for people with multiple medical problems to feel that they have lost control of their health or their life in general. Having several different medical problems usually requires seeing several different doctors on a regular basis, juggling medical appointments, lab tests, procedures and multiple medications. This can often feel overwhelming. Did you know that more than 90% of people on dialysis have at least one other medical problem besides kidney disease and that at least 50% have three or more other medical problems?

This means that people receiving dialysis have many medical issues to cope with besides kidney disease. Although it may not seem like it at first, medications can be the tool you use to be in command of your medical problems. Medications can help you be in control of your health rather than feeling that your health problems are controlling your life.

One example of using medications to manage your health is in controlling your blood pressure. High blood pressure, also called hypertension, is common in people with kidney disease.

Controlling blood pressure is important because it reduces the risk of cardiovascular diseases such as stroke, heart attack, heart failure and angina, which can lead to death. Removing excess fluid during dialysis is the main way to treat blood pressure in people on dialysis. This is why restricting fluid intake and staying for your whole treatment time are so important. However, many people also require medications to help control their blood pressure.

There are several different classes of medications that can be used. Many of the medications have benefits to your heart health, other than controlling blood pressure, of which you may not be aware. In people who have had a heart attack, beta-blockers (for example, metoprolol, atenolol and carvedilol) are a class of anti--hypertension medications that are strongly recommended, as they can help prevent a second heart attack. Another class of blood pressure medications recommended for people who have had a heart attack is ACE inhibitors. Examples of ACE inhibitors are lisinopril, captopril, enalapril and benazepril, to name a few.

ACE inhibitors help the heart to heal and improve function after a heart attack. Both of these drug classes are also commonly used to treat blood pressure in people who have not had heart attacks. Some other blood pressure medications that are often used are calcium channel blockers such as amlodipine (Norvasc) and nifedipine, ARBs such as losartan (Cozaar), valsartan (Diovan), and irbesartan (Avapro), clonidine and minoxidil.

Another problem that can often be controlled with medications is leg cramps or restless legs. Leg cramps during dialysis may be due to changes in fluid status that occur during dialysis. They can often be treated with quinine or vitamin E supplementation.

Restless legs due to Restless Legs Syndrome (RLS) are defined as the desire to move the limbs due to feelings of pins, needles, crawling or cramping sensations. RLS is usually treated with medications such as benzodiazepines (for example, clonazepam, lorazepam and diazepam) and dopamine blockers such as carbidopa-levodopa (Sinemet), pramipexole (Mirapex) and ropinirole (Requip)). The dopamine blocker ropinirole (Requip) is the first medication that has been approved by the Food and Drug Administration (FDA) for the treatment of RLS. Other medications that have been used with success to treat RLS or leg cramps are gabapentin (Neurontin) and clonidine. Many times different medications work best for different people and several different ones should be tried.

These are just two examples of how medications can help you to be in control of your medical problems and overall health. Using medications to their full potential by taking them as prescribed by your doctor will benefit you by decreasing your risk of medical complications and making you a healthier person. The ultimate result of being in control of your health will be an increase in your quality of life.

Coping with Loss: Denial
A sermon given by the Reverend Roger Fritts on February 6, 2000
at Cedar Lane Unitarian Universalist Church, Bethesda, Maryland (excerpt)

When I was 8 years old, my mother and father made an announcement to my sister and me. They told us that mom was pregnant and that in a few months we would have a new baby in the house. My sister, who was thirteen years old, accepted this announcement, and asked a few questions. I told my parents that I did not believe them. I insisted that we were not going to have a new baby. The more firmly they assured me that we were going to bring a new baby into the house, the more firmly I assured them that we were not.

This is my earliest memory of my own denial in the face of loss. What I was losing when I was eight years old was the family structure that I had known for my entire life. There was mom, dad, older sister and I. It was not a perfect family by any means, but I was familiar with it. I was used to it. I found the prospect of having another child added to our family so scary as to be unacceptable. If a new child arrived, the relationships that I had become comfortable with would change forever. I would lose the attention of my mother and father. I would lose my role in the family as the youngest child. Faced with these losses, I simply refused to believe what my parents were telling me.

It is not just children who have this reaction when they hear news they had not been expecting. In his book Lost in Place, Mark Salzman tells the story of how he called his father the day he was accepted into Yale University. Salzman never had an occasion to call his father at work before. He reached a secretary where his father worked and she paged him. After a few minutes Salzman's dad got on the line with an anxious hello, giving the impression that he thought it was the highway patrol calling to say that an accident had wiped out his wife and children.

Mark Salzman said: "I'm fine, Dad. You won't believe this, but I got into Yale."

"What?" his dad asked.

Salzman told him again. There was a long pause. Finally his father said "Okay, let's not get excited yet. Call the admissions office and check. They might have stapled your application to somebody else's or something.”

Salzman called the admissions office, and they assured him that his application had not been stapled or glued to anyone else's. When he called his dad back and told him, his father was speechless.

I do not mean to suggest that Mark Salzman's father believed that being accepted to Yale was a reason for grief. What I am suggesting is that we have a hard time accepting news that dramatically changes the structure of our family and how we view the world.

In April of my ninth year, a baby brother was born into my family, and in spite of all my initial denials I found him to be interesting to have around. Today my baby brother lives and works near Annapolis, Maryland. By profession he is a chef. When I eat one of his excellent meals, I am glad I was wrong and my parents were right 40 years ago. Change is hard, but it is inevitable, and it can lead us in beautiful and exciting new directions.

Remember the Basics When Coping With Loss: Healthy Strategies When Facing a Life Challenge
Kristi Dyer, MD

When faced with a life challenge, a loss, it is helpful to remember the basics.

This short list provides healthy coping strategies to keep you moving forward.

1. Take it one hour at a time, one day at a time -if need be one moment at a time.
2. Get enough sleep or at least enough rest.
3. Try and maintain some type of a normal routine.
4. Remember that regular exercise helps relieve stress and tension.
5. Eat a balanced diet. Limit high-calorie and junk food.
6. Avoid using alcohol, medications or other drugs in excess or to mask the pain.
7. Do those things and be with those people who comfort, sustain and recharge you.
8. Talk to others, especially those who have lived through and survived similar experiences.
9. Find creative ways - journal, paint, photograph, build, woodwork, quilt, knit, collage or draw - to express intense feelings.
10. Remember coping skills you have used to survive past losses. Draw upon these inner strengths again.

SMILE: Finding your humor is a good indicator of recovery.

You have heard of the old adage, “laugh until you cry.” Well, I think the same could be true for “cry until you laugh.” Is it okay to laugh when you are grieving or feeling loss? You bet it is.

As David Gascan indicated, “When we become overwhelmed, we forget that humor can bring relief. It helps us to cope with our anxieties and takes our minds off our troubles. Using our sense of humor allows us to put our distresses in a place where they do not affect us negatively. It gives us a breather by diverting our attention when things get too difficult to handle.”

So, bring on the tears and bring on the laughter. Know that it is okay to find joy in life even in the face of loss.

As Phyllis Diller most aptly said, "A smile is the curve that sets everything straight."

Living with Loss: A Kind of Life Training
Penny Andrews, Chaplain

Consider these words from Helen Keller, entitled "Rude Awakenings."

"The example of the newly blinded man is so concrete; I wish I could use it as a type for all life-training. When he first loses his sight he thinks there is nothing left for him but heartache and despair. He feels shut out from all that is human. Life to him is like the ashes on a cold hearth. The fire of ambition is quenched. The light of hope is gone out. The objects in which he once took delight seem to thrust out sharp objects at him as he gropes his way about. Then comes some wise teacher and friend and assures him that he can work with his hands and to a considerable degree train his hearing to take the place of sight. Often the stricken man does not believe it, and in his despair interprets it as mockery. Like a drowning person he strikes blindly at anyone who tries to save him. Nevertheless the sufferer must be urged onward in spite of himself, and when he once realizes that he can put himself in connection with the world, a being he did not dream of before unfolds itself within him. If he is wise, he discovers at last that happiness has very little to do with outward circumstances, and he treads his dark way with a firmer will than he ever felt in the light."

Likewise, those who have been mentally blinded "in the gradual furnace of the world" can, and must, be pressed to look for new capabilities within themselves and work out new ways to happiness. They may even resent faith that expects nobler things from them - how little we know ourselves! We need limitations and temptations to open our inner selves, dispel our ignorance, tear off disguises, throw down old idols and destroy false standards. Only by such rude awakenings can we be led to dwell in a place where we are less cramped, less hindered by the ever-insistent External. Only then do we discover a new capacity and appreciation of goodness and beauty and truth.

Further thoughts: Helen Keller spoke of the diagnosis of blindness because that is the world she understood. Each of us understands that life will inevitably involve loss. And loss inevitably causes us to grieve what we have lost. Grief takes time and patience. If we allow ourselves to stay open to the healing process we begin to access what is known as the resilience of the spirit. It brings forward a wisdom and new appreciation for the gifts life offers in the face of great challenges.

May you receive sustenance from the tree of life.

Autumn Announcements

Every year about this time we celebrate the lives of those dialysis patients who died throughout the year. In order to offer support to those of us who care about these patients and recognition to those who loved them, we offer a Service of Remembrance. You are welcome to join us to share a thoughtful and reflective experience with patient families, dialysis patients and staff. This year the Service of Remembrance will be held on Tuesday, October 16 at 6pm at Wisconsin Dialysis.

The Sound of Music. You may have already heard lovely music in WDI and Kidney Clinic waiting-room. How did this happen? Thanks to the thoughtful memorial contribution by the Roger Wentorf family, the gift of music will be enjoyed by all who are waiting for their treatment, waiting for their ride home or just visiting with others. If you would like to learn more about you can contribute to the Patient Fund and how it serves dialysis patients, please speak to your social worker.

Dialysis Technician Week begins October 8. Thanks to the dialysis technicians at WDI, you are able to receive prompt and caring service. They are skilled to put you on treatment, monitor you during treatment and get you safely out the door. Plus, they are known to provide a little extra, like get you a warm blanket, place a chair under you feet to keep them elevated or bring you a cup of ice. Large or small request, big or little need, your dialysis technician is here to keep you comfortable and healthy. Please thank the following dialysis technicians: Jan, Jill, Mark, Sherri, Deb, Marcia, Kelly, Molly, Martha, Karen, Danny, Bernard, Ashley, Dametra, Danielle, Cassandra, Easton, Geri, Dave, Cheryl, and Mary.

The holidays are fast approaching. If you or someone you know is in need of help over the holidays, please contact United Ways 211 to find out more about programs for Thanksgiving and Christmas.

If you are working through grief and/or loss issues and find the holidays particularly difficult, you can contact United Ways 211 to find out about a resource that may serve your need. Hospice Care, Inc., also assists with these issues and you could reach them by calling (608) 276-4660 or (800) 553-4289. Or you can check the web by typing in key words such as “loss,” “grieving” or “life change.” You can also speak to your social worker regarding issues related to holiday help and grief or loss issues.

Millie Samaniego, MD, will be conducting a lecture and open discussion on kidney transplantation. Notification of the exact date and time of the event will be forthcoming. Dr. Samaniego has offered this well-received and informative program in the past.

Coping With Loss: Guide to Grieving and Bereavement

Working through your grief can be a painful process, but it is necessary to ensure your future emotional and physical well-being. Experts believe that if you don’t mourn when your loss is fresh, the grief may stay bottled up inside you and cause emotional problems or physical illness later on.

What is grief? The definition of grief includes the emotions and sensations accompanying the loss of someone or something dear to you. The English word comes from the Old French grève, meaning a heavy burden, which makes sense, given that grief can weigh you down with sorrow and other emotions, with both psychological and physical consequences. Grieving is the process of working through a loss. The loss could be the death of a loved one, the loss of independence, the loss of a job or even the loss of a relationship. With any grieving you face the loss of what might have been. Every life marker can be a reminder and can be an occasion for renewed grief.

Are there stages of grief? In 1969, based on her years of working with terminal cancer patients, psychiatrist Elisabeth Kübler-Ross introduced what became known as the “five stages of grief.”  While these stages represented the feelings of people who were themselves facing death, they also have come to be applied by many to people who are experiencing other negative life changes (a break-up, loss of a job) and to people facing or experiencing the death of loved ones. Kübler-Ross proposed these stages of grief:

• Denial: “This can’t be happening to me.”

• Anger: “Why is this happening? Who is to blame?”

• Bargaining: “Make this not happen, and in return I will ____.”

• Depression: “I’m too sad to do anything.”

• Acceptance: “I’m at peace with what is going to happen/has happened.” 

Our grief is as individual as our lives. These stages are merely a guidepost of what many experience during the grieving process, but know that you will respond to your loss in your own way. There is no right or wrong way to grieve and there is no timetable for grieving. But there are ways to make your recovery from grief more complete.

The information above is provided with the help of the website Help Guide. Ideas for coping with loss and grief are provided in this newsletter along with other helpful information. Please feel free to speak with your dialysis social worker for additional resources and support.

Another way to cope with the stress of change, grieving a loss, or getting through the holidays, for that matter, is through the use of relaxation. Consider trying on of the techniques described below. There is a wealth of information on the web, which is where the information on this page was found.

Reflect, Breath Deep, and Relax…….