Dialysis: It's a Partnership - Part I

Skipping a Dialysis Session and Nutrition

Medication Adherence: Ideas and Strategies to Help

The New KDQOL: Good Dialysis and Good Attitude go Hand in Hand

Don’t Be Shy: Ask Questions!

New Year's Resolutions and Wishes

From the Director’s Chair: Beware of the Three Silent Killers

Good Dialysis: Means Being a Good Partner in Your Care

Dialysis: It’s a Partnership (Part II: The Patient's Role)
John Hensey, Administrator

As a patient here at WDI, do you ever wonder how you could “improve” and do “better?"  Do not leave it up to your provider and WDI staff members as the “experts!"

You should certainly listen to the expert’s advice but you need to take control of your health care and make all the final decisions. Be sure to think for yourself!

We cannot emphasize enough the importance of the role you play in achieving successful dialysis care. In fact, participation is arguably the most important factor for patients who achieve long-term success on dialysis. We encourage you to:

• be very involved in your care
• ask lots of questions
• learn everything you can about kidney disease
• understand how and why your dialysis treatments work
• make personal decisions that help keep you independent and living a high quality of life.

Most of what you need to do is very simple, even though it requires a lot of self-discipline. We believe in you! You can do it!  Everyday choices that help keep you healthy and independent include:

• attending or performing all your dialysis treatments (especially when you are tempted to skip)
• completing your full treatment time (even when you really want to quit early)
• controlling your fluid intake (despite the fact that you are always thirsty)
• making smart diet selections (even when tempted by desirable but poor food choices)
• understanding and taking all your prescribed medications
• exercising regularly (even when it’s no fun!)
• developing an AV fistula for a dialysis treatment access (if you can)
• keeping a job and working if you can (this really helps most patients feel better).

You are not alone in your attempts to improve! Please rely on your social worker, dietitian, nurse and providers for their expert help with staying healthy and living well.

At Wisconsin Dialysis (WDI), one of our goals is to treat every patient as if they are the “only” patient. This philosophy reflects our focus on meeting individual patient needs and treating each patient with respect and dignity. In a large dialysis program with over 160 patients, making each patient feel like the “only” patient can admittedly be a challenge. We know we can always improve at this goal but hopefully we succeed most of the time.

Let us know how we are doing! The annual patient satisfaction survey is coming out soon so please give us your feedback on our performance over the past year. Your responses will tell us where we have done well and where we need to improve.

A few important reminders:

• The WDI East Clinic at 4600 American Parkway in Madison is open for patient transfers from Fitchburg. If you are interested, please ask your social worker to place your name on the waiting list.
• Stop at the Fitchburg Clinic registration desk or call (608) 270-5600 if you have any registration updates such as employer, home address, phone number, emergency contact, insurance coverage, etc…
• We currently have 25 patients who dialyze in the comfort of their own home and on their own schedule. If you are interested in learning more about home based dialysis options, please ask your doctor for more information.

n closing, I want to thank you for trusting WDI providers and staff with your dialysis care needs. Please know we will continue working hard every single day to earn, keep and deserve your trust. Happy New Year!

Skipping a Dialysis Session and Nutrition
Jennifer VandenHeuvel, Dietetic Intern

The snow may be falling so hard that it’s blinding. The wind may be whipping so hard that it hurts. It may be so cold that you feel numb as soon as you step outside. You may be thinking “I should just skip going in today for dialysis”. Could missing only 1 dialysis session make a difference? Unfortunately, YES it makes a huge difference! 

Studies have shown that 8% of dialysis patients skip at least one session per month, while another 20% shorten at least one session by 10 or more minutes. You may ask yourself if this could cause complications down the road. The answer to that is YES! One study showed skipping dialysis treatments was associated with a 69% increase in the risk of death.

You may be wondering, other than the risk of death, what are the other consequences of skipping a dialysis treatment?  The consequences are increased potassium and phosphorus concentrations in your blood. Skipping a session will cause you an increased chance of having an elevated phosphorus level (normal 3.5-5.5 mg/dl).

You are also more likely to have a potassium level above 6.0 mEq/L (normal 3.5-6.0 mEq/L). Skipping also equates to gaining more weight in between dialysis sessions, which could make your next dialysis session harder on you, because this excess fluid will need to come off.

If your phosphorus and potassium concentration is higher in your blood you may have to restrict more of the foods you enjoy eating. This means less milk, yogurt, ice cream, nuts, fruit (bananas and raisins), potatoes, and beans. Skipping a session will also make you feel worse because you have more toxins built up in your blood. Remember, another reason you need dialysis is to remove toxins.

So, put on a hat, scarf, gloves, and coat and do everything possible to your dialysis session. It may sound like a hassle on those cold blustery winter days, but dialysis will make you feel better, live longer, and allow you to eat more of the foods you enjoy.

Medication Adherence: Ideas and Strategies to Help
Kim Holdener, Pharm.D.

Medication adherence means taking medications as they are prescribed. Non-adherence, or taking medications incorrectly, includes not filling or refilling a prescription, stopping a medication without your doctor’s knowledge or consent, taking more or less than the prescribed dose, and taking a dose at the wrong time. Taking medications incorrectly results in 20% of preventable adverse drug events, 10% of older adult hospital admissions, one-fourth of nursing home admissions, 125,000 deaths yearly, and $100 billion in health care costs yearly.

There are several reasons why you may not be taking your medications as prescribed. This article will discuss some of those reasons and ideas to help with medication adherence.

Lack of knowledge

Whenever you are taking a medication there are four important facts you should know about it: the medication name, the dose, how to take it (e.g. how many times per day, what time per day, special instructions) and why you are taking it. You are more likely to take a medication correctly if you understand the importance and what results to expect. If your health care team does not explain all the necessary information about the medication, just ask. Often they do not realize that you need more information.

You should carry a medication list with you at all times that has the four important facts about your medications listed on it. There is a sample medication list template in this newsletter that you can use or you can create your own. There are several websites such as mypillbox.org that can create a medication list for you and display it in many different layouts.

Your medication list should include all prescription, over-the-counter (non-prescription) and herbal supplements that you take. An up-to-date medication list is important every time you see any health-care professional so they can avoid medication errors, check for drug interactions, and provide the best care possible.

You should also choose one pharmacy and get all of your medications from that pharmacy. The pharmacy will then have a complete list of all your medications and can check for problems or interactions between your medications.

Cost/Availability

As we all know, medications can be very expensive even if you have prescription insurance. Your doctor and nurse practitioner usually do not know how much you have to pay for prescriptions. If you have having trouble paying for your medications please let your WDI health care team know.

Often there are changes that we can make to your medications to reduce the cost. Many of the larger chain pharmacies, such as Target, Wal-Mart, and Walgreens, have generic drug programs that offer medications at a reduced price. Sometimes these programs can provide your medications at a lower price than your insurance co-pay. There are patient assistance programs offered for many medications that can provide medications for no charge to those that qualify.

If you have trouble getting to a pharmacy to pick up your medications or remembering to get refills there are services to help you. Many pharmacies provide a delivery service or will mail medications to your home. There are also automatic refill programs available at many pharmacies that refill your medications every month when they are due so you don’t have to remember. The pharmacy will then call you to let you know your prescription is ready.

Complex medication regimen/Remembering to take them

If you have trouble remembering to take your medications, use a reminder system to help you. A pillbox is the most commonly used reminder system. You can set up a pillbox each day, or fill one up for a whole week’s worth of medications. Some pharmacies will fill pillboxes for you. You can also use medication charts or lists that are split up by time of day to help you remember what time to take your different medications. The medication list in this newsletter and the website mypillbox.org indicate what time of day to take your different medications.

Some other ideas are to use a medicine calendar where you check off the medications you take each day as you take them, take your medications at the same time each day, and take them along with meals or other daily events like brushing your teeth. If you take medications several times a day, but don’t like to use pillboxes, try getting several differently colored stickers and putting them on your medicine bottles with each color standing for a different time of day.

For example, red can be for morning, blue for noon, green for evening, etc. To make this system more portable, put the colored stickers on small resealable bags and then put the appropriate pills in the bags. You can easily take the bags with you when you go out for the day without having to bring all of your bottles with you.

If you feel like you are taking too many medications, you might be right! Talk to your medical team to see if any of your medications can be stopped. Sometimes people end up taking more medications than they need and your medication list can be streamlined to make it less complex. Another way that we can help you is to review what time of day you are taking your different medications. It may possible for you to group more medications together and have fewer times throughout the day that you need to remember to take them.

Side effects

Sometimes medications can cause bothersome side effects. If you think you are having side effects from your medications talk to your health care team. We may be able switch you to a different medication, lower the dose of a medication, have you take a medication to treat the side-effect, or change your schedule to minimize the side-effect.

Dialysis patients take an average of eleven medications a day. This puts you at a higher risk of medications errors compared to the general public. Hopefully some of the ideas listed here will help you with taking your medications as prescribed. Medication adherence is primarily your responsibility, but there are many things the staff at WDI can do to help you. All you have to do is let us know that you need help.

The New KDQOL: Good Dialysis and Good Attitude go Hand in Hand
Anastasia Korbitz, LCSW

You may have noticed your social worker requesting that you complete a Quality of Life Survey. Although completing the Quality of Life (QOL) survey is voluntary, the new Medicare regulations require that your social worker offer to let you complete one and then share the results with you. Wisconsin Dialysis has made the decision to use a specific QOL tool called the KDQOL-36. This is a tool developed by researchers and has been found to be a reliable measurement specifically for dialysis patients.

You may be thinking, “What, more paperwork!” However, this is actually a very helpful tool. It helps both you and your social worker measure important factors associated with doing well as a dialysis patient. The KDQOL-36 questions consider 5 areas: your physical functioning (PCS), your emotional functioning (MCS), the level of Burden you are experiencing, the Effects of Kidney Disease on your daily life and current Symptoms or Problems you may be experiencing. Your answers to these questions are then compared to others on dialysis who are similar to you.

Why do all this? Well, it does help open dialogue between you and your social worker about issues or concerns you may have. Sometimes your social worker is not aware of your concerns and perhaps you weren’t either. It helps to talk about things that are bothering you and maybe your social worker can help.

Low scores on the Quality of Life scale do correlate strongly with mortality and hospitalization, therefore working to maintain or increase your KDQOL-36 scores will be in your best interest. If your scores are in the positive territory, well then it just validates what your already know about yourself!

The purpose of the KDQOL-36 is also helpful to define and set goals for yourself. Perhaps your social worker can help you set goals or help locate resources to assist you in meeting your goals. Remember, though, change comes from you.

Goals are important to give you a sense or purpose and direction. Your social worker can be your spring-board of support and goal attainment, but ultimately it will be up to you to improve your quality of life, by improving your attitude and using own your motivation to help yourself.

You will be asked by your social worker to complete a KDQOL-36 at your annual review, 60 days after you start dialysis or 60 days after a hospital stay that is 8 days or longer. The KDQOL-36 could be a great way for you to track your progress.

So, there you have it, another way that you can engage and participate in your own care by having a better understanding of yourself, your overall attitude about your quality of life and developing and pursing your personal goals. If you have any questions about the KDQOL-36 ask your social worker.

Don’t Be Shy: Ask Questions!
Deb Parker, MSSW

Why is it the Patient’s responsibility and right to ask questions?

The dialysis staff throws a large volume of information at you when you first start dialysis treatments. You won’t remember all of it. You likely won’t understand all the information, at first, or make sense of it either.

As staff, we won’t know how much new information you absorbed, remembered, or understood. The only way we can help you increase your knowledge of kidney failure and how dialysis helps your body function is by answering your questions. 

Why should the Patient bother to ask questions to understand all of this?

Increasing your understanding lessens your fears. Loss of such a vital function of your body is frightening and the process of dialysis is downright scary. I have seen a number of patients start out with much anxiety. With time and many questions later, those patients have come to accept their disease and accept dialysis treatment. They no longer dread coming to the center or hooking up to their equipment at home. It becomes part of their routine.

What else can decrease anxiety and fear?         

Be observant and learn all you can about dialysis and how it works. The more you understand, the less scary it is. Take time to read information found on the computer, at the library, or through materials given or sent to you by professionals in the field.

Speak with your Social Worker about the feelings you are having. It helps to let these thoughts and emotions out. It is reassuring to hear that these feelings are normal and not unusual, and that people all around you share them.

How long do I have to keep asking questions?

I have been a Social Worker here at WDI for over 2 ½ years now and I still keep asking questions. In fact, I bet the other Social Worker, Anastasia, would say that she still keeps asking questions and she’s been working with dialysis patients for over 10 years. So, the answer is that there is no end point and that there’s always more to learn.

New Year's Resolutions and Wishes

The end of a New Year and beginning of another one is certainly a time of reflection. So, in recognition of the time-honored tradition of New Years resolutions patients were asked to respond to the following question: My goal, wish or resolution for 2010 is? Here are their answers:

Dom S. “To write lots more parking tickets! No really, I am finally on the transplant list and will continue to try and improve my overall health in preparation for surgery. Finally, sell my house (If anyone would like a lovely old Victorian in Evansville…….).

Alana A. “To find time to help others in need by volunteer tutoring, working at a call center and/ or working with the Boys and Girls club of America. I also want to be more physically fit next year so I want to introduce an exercise routine in my schedule along with weekly counseling sessions for my mind.”

Julia R. “I would like to take this time to wish everyone a healthy and happy New Year, for 2010 and for years to come. My wish for the New Year is to see the Yankees win the next World Series and the one after that! Also, I would like to see Brett Farvre win the Superbowl. Enjoy life while you can and stay healthy. I like to say if you open your eyes in the morning, it’s a good day!”

Randell W. “My goal is to get a new kidney. It’s a hefty goal but I’m doing all the right things now I just need a donor. I just finished my dental work now all systems should be a go. I’ll hope and pray and see what happens.”

Alex M. “I just want to get better.”

Nadine G:  I want to progress to the point of using my walker more than just in my room and retiring my wheelchair completely.”

Juan T: “To find a job and get better.”

Geraldine R: “I want to maintain my diet, stay healthy and exercise daily. To continue traveling and dancing every chance I get. I want to continue talking with the new patients from the Options class to put their minds at ease and let them know not to look as dialysis as an obligation, but a life-saving treatment. Keeping a positive attitude, following the instructions given by the staff and not missing treatment, are important for you to have a positive and productive life and that it’s helpful to have their family involved in their care."

From the Director’s Chair: Beware of the Three Silent Killers
Paul Kellerman, MD

Being on dialysis is hard enough, with all the traveling and time spent in the chair, but our mutual goal is to keep you as healthy as possible. It’s seems hard to do something when we don’t feel the effects, but there are “silent killers” that are important to deal with for your health. And when we talk about health on dialysis, we are primarily talking about preventing vascular disease (“hardening of the arteries”).

The term “silent killer” originally was coined for high blood pressure, since blood pressure is usually not “felt” until it is very very high, and we all know it is a risk factor for heart attacks and strokes. There are two ways to lower blood pressure. One way in dialysis patients is to lower dry weight (take off more fluid), and this method is preferred, as long as you don’t get cramps. The second method is taking a medicine. If you are prescribed a medicine, please continue to take it unless otherwise instructed.

The second “silent killer” is phosphorus. If your kidneys aren’t working, then you can’t get rid of phosphorus, and the level rises in your blood, causing calcification of blood vessels, and also causing hormones to be released that pull calcium out of your bones, which weakens the bones.

We want you on a high protein diet, which means meats, eggs, and other high protein foods, and these all have phosphorus in them, so it is unavoidable. But certain foods are very high in phosphorus, such as dairy proteins. It’s pretty hard to convince someone from Wisconsin that dairy products such as cheese and milk are bad for them, but they truly are if you are on dialysis, and should be avoided. And those phosphate binders we prescribe are necessary to keep the phosphorus down in your bloodstream. So although you don’t feel anything is wrong, limiting phosphorus in your diet and taking those binders keeps your bones and blood vessels healthy, preventing heart attacks and strokes.

The third “silent killer” is fluid. Because your kidneys don’t work, you gain fluid weight between each dialysis. That stretches your heart and makes your heart work harder to pump blood, and we remove that fluid with dialysis, so there is a cycle of stretch and shrink every few days. You do NOT have to be short of breath to have this fluid cycle cause problems with your heart over time, so the damage is often silent. So limiting fluid intake is critical to heart health. Do whatever it takes to cut fluids down.

Good Dialysis: Means Being a Good Partner in Your Care
Penny Andrews, Chaplain

No one chooses to come down with any disease. It is one of those life ex-periences that comes to us. We wouldn’t wish whatever befalls us on anyone else, but the truth is, we wish our physical challenges hadn’t happened to us. This is true of kidney disease.

It takes time to adjust to the experience of kidney failure, and then it takes additional time to get used to dialysis, if it is needed. The nature of how we humans make meaning out of what happens to us simply takes time, as does coming to the realization that we have an important role in how this unfolds for ourselves.

There are so many people involved in the renal team that have medical advice that needs to be followed. It’s easy to lose sight of your role. Modern medicine is learning that better outcomes occur when the patient is a partner.

Communication is the key to partnering. Information shared is a gift.

As a patient, your well being depends on the good medical advice of your team. And while it can be scary to ask questions and suggest possible alternatives, it is when we are speaking our truth, we have the best opportunity to create a successful reality in any given situation.

This can make all the difference to your medical team in understanding you as a person better, which, in turn, makes them better practitioners on your behalf.

Partnering involves taking responsibility to influence the decisions that affect your health and well being

Here are some ideas related to “partnering with your health team” with the goal of establishing the best practice care for you.

When you have an important appointment coming up, like your Care Conference, plan ahead by doing the following:

• Identify the critical points of an issue- and bring your questions about these issues to your team.
• Think about what your realistic hopes are with regard to what is to be discussed.

Keep in mind these important beliefs:

• As a health partner, whether it is a physician, nurse, dietitian, or social worker, everyone on the team is invested in a good outcome for you.
• In partnering on your health issues, start with the framework that you and your team are seeking  mutually acceptable solution to the challenges you may face
• Try to understand the differing perspectives  
• Discuss problems and concerns openly with those involved
• Use active listening techniques to ensure that what you are saying is what you mean, and what is being heard is what is intended

Partnering in healthcare is the wave of the future. For many people facing issues of chronic illness, it has already begun. Your perspective makes all the difference in how you feel. And how you feel, becomes how you measure your quality of life.