A Healthy Start Can Slow Progression.

Every day in the United States, about 120 people are told that they have "end stage renal disease." Many of these people fear that ESRD will mean the end of their life. Kidney disease is not the end, although it is quite normal to be afraid at first and to worry about how kidney disease will change your lift.

In 1997, Oschner Clinic Renal Services developed and implemented an educational program for people with pre-end stage renal disease and their families. The Healthy Start program is based on the belief that education can help people with kidney disease improve or maintain their health status, as well as broadening the knowledge they and their families have about treatment options.

People with kidney disease are referred to our program by their nephrologist or primary care physicians, or by their own request. People who have mildly elevated levels of creatinine (1.4 mg/dl or greater), and would not need renal replacement therapy for at least 18 to 24 months, enter our Healthy Start Basic class. People with higher serum creatinine levels who will need renal replacement therapy and/or dialysis in less than six months, take our advanced class. Both classes emphasize the multidisciplinary approach to the management of kidney disease. Family members are encouraged to attend and participate in the classes.

The basic class is kept small (six patients and their family members) to allow give and take between participants and the RN (registered nurse) Educator(*) who teaches the class. The class runs three hours and includes a telephone follow up in two weeks by the RN Educator, to assess any additional needs and to offer any necessary support. Follow-up is repeated quarterly, or until the participant enrolls in the Advanced class.

The Advanced class is an intensive one-on-one session of at least one hour each with the dietitian, social worker, and nurse clinician. The dietitian develops an individualized diet prescription and instructs the patient and family in meal planning. The social worker provides an in-depth assessment of financial and psychosocial needs, and assists the individual in making the decision on choice of renal replacement therapy.

The Healthy Start Program

Our program strives to educate people who have kidney disease so that:

* they can get answers to their questions about kidney disease;

* they can make informed decisions about their own medical care;

* they can better cope with the disease.

It is our mission to:

* help improve or maintain current health status;

* slow down the progression of kidney disease (keep it from getting worse);

* decrease emergency room visits;

* encourage participants to take an active role in their own care;

* help participants take control of their disease and their life.

Our program covers all the basic information necessary to understand kidney disease, including:

* the basic anatomy of the kidneys and urinary system;

* the causes of kidney failure;

* how to read common laboratory reports;

* safe use of over-the-counter medications;

* anemia in chronic kidney failure;

* treatment choices and renal replacement therapies;

* diet;

* keeping your bones strong and healthy;

* exercise;

* coping skills;

* vocabulary used by medical professionals when talking about kidney disease.

What the kidneys do

The primary function of your kidneys is to rid the body of waste products (see Fig. 1), but they have other functions as well. The kidneys produce hormones that help control blood pressure (see EXCEPTIONAL PARENT, March 1999, p. 36). They make EPO (erythropoietin), a substance that stimulates and is used in the production of red blood cells, which carry oxygen to all parts of your body. The kidneys also manufacture vitamin D, which is critical in keeping your bones and teeth strong and healthy.

Figure 1

THE KIDNEYS AND HOW THEY WORK

1. Blood enters the kidney through an artery from the heart.

2. Inside the kidneys, blood is cleansed as it passes through millions of tiny blood filters called nephrons.

3. Newly cleansed blood returns to the bloodstream by way of veins.

4. Waste products and excess fluids pass from the kidney through the ureter and enter the bladder where they are stored as urine.

5. When the bladder becomes full, urine passes out of the body through the urethra.

When the kidneys are damaged, they are not able to work as effectively as they should. Early and moderate kidney failure are diagnosed when the kidneys can only handle 30 to 60 percent of their normal function. Severe kidney failure is diagnosed when function falls to 10 percent. Kidney failure is diagnosed when the kidneys can only handle 10 percent of their normal function. The symptoms of kidney failure are:

* edema, or swelling

* change in pattern of urination 

* increased blood pressure

* itching

* nausea or morning sickness 

* decreased appetite

* muscle cramps, twitching, restlessness

* bloody or tea-colored urine

* irritability

* difficulty concentrating change in sleep patterns

* tiredness

* back pain just below the rib cage (this is rare).

Symptoms do not usually appear until the later stages of the disease. As the degree of failure becomes worse, more symptoms will appear.

A person who has kidney disease, but not kidney failure, may be advised to decrease the workload of the kidneys. This is accomplished through an individualized treatment program which includes medication and a special diet.

Results note your progress

Your physician will routinely order laboratory tests to tell how well your kidneys are working. If you understand the reasons behind each test, you can use the results to determine how you are doing in your program. Some of the laboratory tests include:

BUN (blood urea nitrogen): BUN is a waste product of the breakdown of dietary protein. A high BUN indicates that your kidneys are not removing enough waste. Normal range: 5 - 25 mg/100 ml.

Creatinine (Cr): Creatinine is a waste product created by the normal breakdown of your muscle tissue. It is normally removed from the bloodstream by the kidneys. Your creatinine level is a good indication of how well your kidneys are working and how much muscle tissue you have. An increased level of creatinine means that your kidneys are not working as well as they should. Normal range: 0.5-1.5 mg/dl.

Creatinine clearance (Cr cl): Creatinine clearance measures how well your kidneys are filtering waste products out of your bloodstream. A decreased creatinine clearance reading means decreased function of the kidneys. Values presented here may reflect normal adult values. Pediatric nephrolgy is very specialized and will be covered in our September issue. Normal range: 80 - 125 mi/minute.

Potassium (K+): Potassium is necessary for normal body function, but too much or too little of it can be harmful. This level should be kept in the normal range. Normal range: 3.5-5.3 mEq/L. A potassium level over 7 mEq/L may cause muscle or heart problems, and even death.

Calcium (Ca+2): Calcium is important for bone growth and formation, and for normal functioning of the body. Kidneys that are not healthy are not able to use calcium properly. Albumin levels often fall in kidney failure due to lack of appetite and decreased intake of nutritious foods. Normal range: 8.5-10.5 mg/100 mi.

Albumin (Alb): Albumin is a protein made by the body to hold fluid in the blood vessels. Normal range: 4.5-5.5 mg/dl.

Phosphorus (PO4): Phosphorus is necessary for the bones, but levels of phosphorus may become too high in kidney failure. This can cause severe itching. A combination of too much phosphorus and too little calcium causes weak, brittle bones. Normal range: 4.5-5.5 mg/dl.

Hematocrit (Hct): The hematocrit is a measure of the number of red blood cells in the body. When kidneys are damaged, they cannot make enough EPO and the number of red blood cells in the body goes down (anemia), causing tiredness, weakness, and shortness of breath. Normal range: 37-48 percent.

Hemoglobin (Hgb): Hemoglobin is the part of the red blood cell that carries oxygen from the lungs to the rest of the body.

Know your medications

There are many causes of kidney failure. The two most common are diabetes and high blood pressure, but other causes include inflammation, chronic infection, blockage, autoimmune dysfunction, and inherited defects. Because of the many causes of kidney disease, every person's treatment is individualized. It is up to you to learn about the medications you are taking and to take them exactly as directed, to maximize their effectiveness (see Table 1). Here are the questions you should ask your doctor:

* What is this medication?

* Why am I taking it?

* When should I take it?

* I tow should I take it?

* How much should I take?

* How often should I take it?

* What are the possible side effects of this medication?

Table 1

COMMON MEDICATIONS

Name of Medication              Action               Usual Dosage

Multi-Vitamin          Many vitamins are           One every day.
                       removed on restricted
                       diets or by dialysis
                       and must be replaced.

Phosphate Binders      Binds phosphorus            Usually taken
                       so it can be excreted.       with your meal.
                       Keeps calcium in the
                       bones and prevents bones
                       from becoming brittle.

Vitamin D, or          Assists with the            Usually once
Rocaltrol[R] (oral).   absorption of calcium        per day
Add oral calcium       and keeps bones strong.     (Physician choice
supplement,                                         may vary).

Calcijex[R] or
Zemplar[R]
(IV in dialysis
 machine)

Epogen (EPO)           A hormone that is needed    Usually given
                       to increase the              as an injection
                       production of red blood     1-3 times per
                       cells and treat              week.
                       anemia (low blood count).

Oral Iron(*)           Adequate iron is needed     Usually taken
                       for EPO to work.            between meals.

It is important that you take only the medications that your physician prescribes for you. Your renal team and all your other healthcare professionals, including your dentist and eye doctor, should know all of the medications you are taking, even home remedies, herbal preparations, and over-the-counter medications. Kidney damage may cause medications to work differently in your body. Never take any medication, herb, or over-the-counter remedy until you have checked with your physician. If you need to take something for a headache, constipation, insomnia, or a cold, ask your physician for a recommendation. Here are some tips to help you deal with your medications:

* Select one pharmacy and stick with it. The pharmacist can become familiar with your treatment plan and help you with questions about medications. The pharmacist can also inform you of any side effects and possible drug interactions.

* Ask if buying two or three months of medication at a time is cheaper.

* Never accept substitutions without consulting with your physician.

* Always carry an updated list of your medications with you at all times. This is extremely important in emergencies.

* Establish a routine. Pick specific times to take your medications and stick to the schedule.

* When you start dialysis, ask how this affects your medications and schedule.

* Medications to avoid: Fleet[R] Enemas (high in phosphorus), medications that contain aluminum and magnesium (antacids like Pepto-Bismol[R], Milk of Magnesia[R], Mylanta[R] Maalox[R], and Carafate[R], Alka Seltzer[R], arthritis and pain medications--aspirin, ibuprofen and other non-steroidal anti-inflammatories), and some decongestants.

* Safe medications: acne cream, sore, allergy/cold medications (Benadryl[R] Chlor-Trimeton[R], Tavist 1[R], Robitussin[R] [regular or DM], Guaifenesin) some pain medicines (Tylenol[R] Percogesic, some antacids (Tagamet HB[R], Pepcid AC[R], Zantac[R] Axid AR[R] Mylicon[R]), some antidiarrheals (Donnagel[R], Imodium[R] A-D, Kaopectate[R]) antifungals (Lotrimin[R] AF Micatin Tinactin[R]), motion sickness pills (Bonnine[R], Dramamine[R]), eye drops (artificial tears, Visine[R], topical antibacterial ointments (Neosporin[R], Polysporin[R], triple antibiotic), stool softeners (Colace[R], Peri-Colace[R] Doxidan[R], Dulcolax[R] tabs and suppositories, glycerin suppositories, Metamucil[R] Effer-syllium, Surfak[R]), skin irritation preparations (Caladrylr lotion, hydrocortisone 1%), and vaginal antififungals (Monistat, Gyne-Lotriminr).

A healthy diet is key

Healthy kidneys filter more than 200 waste products. They also regulate sodium and potassium levels and maintain fluid balances. When kidneys are damaged, these waste products build up and damage the body. Your individualized diet is designed to reduce waste build-up in the blood while maintaining adequate nutrition. You will feel better and avoid complications if you work closely with your renal dietitian and follow your diet. You may be asked to monitor your dietary intake of protein, calories, sodium, fluids, potassium, calcium, phosphorus, vitamin D, and magnesium.

When your body breaks down protein, urea is formed. Too much urea, as seen by an elevated BUN (blood urea nitrogen) in the laboratory results, can result in uremia, causing you to feel sick; your dietian will ask you to limit your protein intake.

When the kidneys fail, they cannot get rid of extra sodium or fluid. Your body retains water, leaving you feeling bloated. If your diet is too high in sodium, you will feel thirstier and want to drink more. This also leads to fluid retention. Excess fluid intake can cause your blood pressure to rise, and cause shortness of breath, congestive heart failure, or fluid in the lungs. Your dietitian may ask you to restrict your sodium and/or fluid intake. Do not restrict your fluid intake until you are asked to do so.

Potassium is important for normal heart and muscle function, but too much can be extremely dangerous, causing muscle weakness, nervous irritability, and weakened heart contractions, High concentrations of potassium are found in fruits, vegetables, salt substitutes, and many other foods. If your kidneys cannot remove excess potassium from the body, your dietitian will help you modify your diet to restrict your potassium intake.

Calcium and phosphorus must be balanced or disorders of bone metabolism may develop. Vitamin D is necessary to keep this balance. The body tries to correct an imbalance by taking calcium from the bones, causing them to become brittle. Soft tissues and blood vessels, on the other hand, harden. When phosphorus levels in the blood are too high, you may be asked to limit foods that are high in phosphorus, such as milk products, dried peas and beans, whole grains, dried fruits, nuts, fish, and cola-based soft drinks. Your physician may also prescribe a phosphate binder to take with meals, along with calcium and vitamin D supplements.

Magnesium is necessary in many of the cellular reactions that are essential for the normal function of the body. In kidney disease, however, magnesium may be stored in the body and become toxic.

If you have to limit your diet, you may not be getting all the vitamins and minerals your body needs. Your physician may ask you to take vitamin and mineral supplements. It is important that you only take what is recommended. As your kidney function changes over time, your dietitian will modify your diet to meet your changing needs. Follow your diet carefully. If you have any questions, be sure to ask your dietitian or physician until you understand your eating plan.

Keep your bones healthy

Immobilization causes bone loss. Bones love the pull of the muscles during movement, which stimulates bone growth. In addition to supporting the body and protecting your internal organs, your bones store minerals that your body needs. The parathyroids, four small glands in your neck, work with your kidneys to help regulate calcium and phosphorus levels. When calcium levels in the blood become too low, the parathyroids become hyperactive in an attempt to raise blood levels of calcium. The effect of their activity is to pull calcium out of the bones, leaving them weak. If the parathyroids are too active, your physician will modify your diet to decrease your phosphorus intake, as well as prescribing calcium and vitamin D supplements. These changes should tell the parathyroids to turn off. In some cases, it is necessary to remove the glands to correct the problems.

During kidney failure, your kidneys may lose the ability to produce the active form of vitamin D. This can also disrupt the balance between calcium and phosphorus in the body. If this is the case, your physician will prescribe the correct type of vitamin D to help you. In general, people with kidney disease should avoid over-the-counter vitamin D supplements.

There is a specific kind of bone disease which affects the majority of patients on dialysis (renal osteodystrophy). This disease can be avoided by following your diet and taking your medications as prescribed, including phosphate binders and vitamin D.

Exercise has many benefits

Regular exercise improves your energy level and your ability to do your daily activities. It can improve your blood pressure while strengthening your bones and muscles. It strengthens your heart and decreases your risk of heart disease while lowering your cholesterol and triglycerides. It can also improve your ability to sleep, reduce depression and anxiety, decrease anemia, and improve your self-image. You should consult with your physician before starting any exercise program.

Coping with kidney disease

Learning to live with any chronic illness is a challenge, not just for you, but your family as well. It is common for people with kidney disease to experience denial, fear, guilt, depression, and anger until they learn to accept their new diagnosis. You may experience a variety of emotional responses, including mood swings. It is important that you talk about your feelings and learn as much as possible about your disease. Knowledge is the key to overcoming negative emotions. If you feel out of control, you should talk with a renal social worker, counselor, psychologist, or psychiatrist. Remember that you are not alone. The other members of your multidisciplinary team are always available to help. (See upcoming articles in the June 1999 EXCEPTIONAL PARENT for more information on the role of the renal social worker.)

Conclusion

The first goal of the Healthy Start program is to delay or avoid the need for renal replacement therapy through early detection, medication, diet, and patient education and involvement on the multi-disciplinary team. People who have gone through the program tell us that they feel healthier and miss less time from work. When they begin renal replacement therapy, they feel more prepared, so it is a less traumatic experience.

Although additional data is necessary to prove conclusively that our program actually delays the progression of kidney disease, our initial data strongly suggests that it maximizes the continuity of patient care and maintains, or even improves, the health status of people who have kidney disease.

KEY TO SYMBOLS

dl = deciliter
L = liter
mEq = milliequivalent
mg = milligrams
mi = milliliter

A healthy diet is key

Keeping Christian Strong

The key to managing kidney disease is ongoing education, says Christian's mom Kathleen. Everything they do in managing Christian's care flows from their continuing effort to keep abreast of the latest developments in nephrology. Kathleen uses the library at a nearby university's medical school to read the latest journal articles. She pores over the bibliographies at the end of the articles to find more articles that are helpful. She networks at parent support groups and contacts national clearinghouses for information. She is on every mailing list for every organization she has found that deals with kidney disease. Christian's dad, Ed, has access to additional information through his employer, a subsidiary of a major pharmaceutical corporation.

While keeping current on the latest information is important, Kathleen and Ed do not ignore the basics in keeping Christian healthy and strong, such as:

* daily moderate exercise;

* a consistent daily medication schedule;

* a special diet, including adequate calorie intake for growth, limited protein, calcium, potassium, and phosphorus;

* regular consultations with Christian's medical team. The proof of their success is Christian himself. His weight is between the 50th and 75th percentile for his age, and his height is in the 26th percentile for his age. As Christian enters the teen years, he may start to lag further behind his peers in growth, but for the time being, the Jacobs are very happy. And so is Christian.

WE WOULD LIKE TO THANK THE FOLLOWING FOR THEIR HELP WITH THIS SERIES:

Julie Best, MSW
Rebecca Sadler, LDN, RD
Marjorie Szerlip, BCSW
Meryl Slowik, RN, BSN, CNN
Arlene Becker, RN
Dori Traina, RN
Shannon Anderson, LPN
Donald T. Erwin, MD
Judy Savoid, LDN, RD
Dina Jackson
Carla James
Frederic E. Husserl, MD
John B. Copley, MD
Anna Marquez-Julio, MD
Jamie Ross, MD
Catherine Staffeld, MD
Julio Figueroa, MD

(*) The Healthy Start RN Educator position is underwritten by Baxter International. The Clinic thanks them for their wholehearted support of pre--dialysis education.

Jill Lindberg, MD is the Director of Chronic Hemodialysis and Nephrology Research at the Ochsner Clinic in New Orleans, LA. She is also the Medical Director for the Healthy Stare program.

Judith Filangeri is the Administrative Director of Renal Services at the Ochsner Clinic.

Ida Self, RN, is the Manager of the Section of Nephrology at the Ochsner Clinic.