What is Chronic Kidney Disease (CKD)?
What Causes Chronic Kidney Disease (CKD)?
Chronic Kidney Disease (CKD) in the Teenager
Complications of CKD & Their Treatment
End-Stage Renal Disease (ESRD)
2 Types of Maintenance Dialysis
Immunosupressive Drug Therapy
Complications of Transplantation
Medications: Names and Purpose
Your Pediatric Nephrologist (pediatrician specialist in kidney diseases of infants, children & adolescents) has introduced you to the term Chronic Kidney Disease (CKD), a term used to describe patients with impaired kidney function. Chronic means that this condition is permanent, cannot be “cured,” and that the function of the kidneys ( bothkidneys) will gradually decline over a period of years ( progressive chronic kidney failure, as depicted in fig. 1). Normally, both kidneys work together, as a team, to filter the blood and eliminate waste chemicals produced by the body’s metabolism in the urine. When both kidneys don’t “function” as well as they should, these waste chemicals accumulate in the blood; their measurement in the blood (often with a urine collection) allows your doctor to estimate what percent (%) of normal kidney function the patient has.
Glomerular Filtration Rate (GFR) is the term that describes how well the kidneys are functioning to filter these waste chemicals from the blood. Normal GFR is between 90 and 130. There are 5 stages of CKD, based upon the patient’s GFR:
- stage 1 – GFR more than 90, but presence of risk factors for CKD, such as proteinuria or abnormal appearance of both kidneys on ultrasound or CT scan (e.g., cysts)
- stage 2 – GFR between 90 and 60
- stage 3 – GFR between 60 and 30
- stage 4 – GFR between 30 and 15
- stage 5 – GFR less than 15; this is considered end-stage renal disease (ESRD), requiring dialysis or kidney transplant
Surprisingly, while most children and teenagers look & feel well until CKD stage IV, complications of impaired kidney function become more frequent and severe as CKD worsens. These conditions and their treatment are described below.
In about 1/3 of children with CKD, the cause is “congenital,” which means that the kidneys and often the rest of the urinary drainage system did not develop properly. These types of conditions can sometimes be diagnosed from a sonogram (ultrasound) during pregnancy, but more frequently they are detected after birth because of urinary tract infection, abnormal urination symptoms, abnormal blood or urine tests, poor feeding and slow weight gain in infants or poor growth in a child of any age. Exact diagnosis usually requires at least a sonogram (ultrasound) and bladder x-ray. Often a (pediatric) urologist is involved with the diagnosis & treatment of children with these conditions, and one or more surgical procedures are required to improve the drainage of urine from the kidneys. Unfortunately, there is no medication or surgery that will make bad kidney tissue better.
Hereditary or familial conditions may become apparent at any time during childhood; sometimes these conditions strike children of healthy parents. The exact diagnosis may be made by an imaging procedure, such as ultrasound (sonogram) which demonstrates Polycystic Kidney Disease, or a kidney biopsy, for conditions such as Alport’s Syndrome. Genetic counseling is advisable to guide parents as to whether or not future children may be affected.
In 2/3 of children with chronic kidney failure, the kidneys are normal until a disease strikes. Most of these “acquired” conditions are due to inflammation of both kidneys (nephritis), and are characterized by protein & red blood cells in the urine. Normal urine made by normal kidneys does not contain either. Sometimes a very large amount of protein “leaks” into the urine from inflamed kidneys and the child becomes swollen with fluid (edema). This is called nephrotic syndrome. Some children have one or more episodes of “dark” urine; so many red blood cells that the urine becomes brown or tea colored. Sometimes hypertension (high blood pressure) brings the child to medical attention. Exact diagnosis usually requires a biopsy (done with a special needle while the child is under anesthesia) of one of the kidneys to examine a tiny sample of kidney tissue under the microscope. Some of these conditions may respond to drug treatment, which can improve kidney function or slow down the rate of decline in kidney function. Even so, many patients have suffered so much kidney damage that the kidneys will slowly fail over several years (progressive chronic kidney failure).
Your teenager has just been diagnosed with a chronic kidney disease. Typical responses, sometimes in phases, include anger (at parents, doctors; it’s not fair, why me) and denial (I’m fine, I feel fine, I look fine, I don’t care about my urinalysis). Adolescence is a time of questioning and/or rejection of authority, impulsivity & risk taking, all of which contribute to the way they respond to the diagnosis & treatment recommendations. Although they may be the height & weight of an adult, the “executive functions” of their brain are still maturing. This term includes foresight, planning, evaluation of risk & reward, and the capacity to separate making the right decision, from the strong emotions that an illness brings up. They truly believe that they are invincible (it won’t happen to me), & no amount of threatening (you’ll be sorry, etc…) is likely to be effective. Don’t expect them to be anywhere near as concerned or worried as their parent.
So what’s a parent to do? Sometimes, we (the parent & the doctor) need to give the teenager some space & time (at least days, sometimes weeks or months) to come to terms (THEIR terms) with their lost perfect health. A good strategy is just to focus on the aspects of their care that are the most day to day & straightforward; medication administration & regular urine & blood testing to monitor their condition. There is usually flexibility in the times and frequency of medication administration, to allow the teenager to make these choices, as well as the most convenient time for them to schedule follow up office visits and lab tests. We emphasize that taking medication is typically a few seconds of their day & we find a way to integrate it into their lifestyle (time of day, where to keep meds so that they’ll be remembered). Relentless nagging is rarely effective & creates only more anger & is another power struggle. “I will” becomes “I did” to stop the nagging. The goal is to have the teen realize that taking medication regularly makes the nagging stop! They want a normal life; peers, school, family. This should be our goal.
While specific treatment for the disease causing kidney failure may not be available or effective, the complications of kidney failure, which are usually without symptoms, can and must be treated, for the patient to remain in good health.
BONE DISEASE: The kidneys produce a special type of vitamin D which helps the intestines absorb calcium from food. As kidney failure gets worse (or progresses), the kidneys will not produce enough of this vitamin D. The bones will not receive enough calcium that can make them weak. As kidney failure progresses, your doctor may prescribe vitamin D (see MEDICATIONS). The other mineral that affects bone strength is phosphorous . Dairy products are the most common source of both calcium & phosphorous. As kidney failure progresses, the kidneys are unable to eliminate the phosphorous from foods in the urine, and phosphorous accumulates in the blood. This also causes the bones to become weak. In young children, this condition can cause bones to bend and twist, and slow the rate of growth. Fortunately, attention to diet and the use of medication to prevent the absorption of phosphorous from foods is usually successful in keeping the bones strong & healthy. Frequent blood tests to measure blood calcium & phosphorous are necessary to adjust these medications.
ACID BUILD-UP: Metabolism of the foods we eat produces acid, which normally is eliminated from the body in the urine. When the kidneys are not functioning properly, this acid accumulates in the blood. It does not cause any symptoms, but it can slow growth, and cause calcium to leave the bones, weakening them. Medication is successful in “neutralizing” this acid build-up; periodic blood tests are necessary to measure the acid level in the blood and adjust the medication.
HYPERTENSION (high blood pressure): The kidneys are responsible for regulating blood pressure (BP). As kidney failure worsens, hypertension is mor e l ikely to develop. Although it rarely causes symptoms, untreated hypertension can cause thickening of the heart muscle and further damage to the kidneys. Treatment usually consists of medication(s) and a low salt diet. Medication(s) may require adjustment according to th e l evel of blood pressure. The most accurate way to measure blood pressure is at home (keep a written record), as it is usually higher in the doctor’s office. Your pediatric nephrologist may also recommend that your child undergo a 24 hour ambulatory blood pressure monitor; as many as 50 BP readings over the course of 24 hours can be analyzed.
ANEMIA: The kidneys normally produce a hormone (a special chemical) which stimulates red blood cell production. As kidney function declines, the amount of this hormone decreases and anemia (low number of red blood cells) develops. Even mild anemia has been demonstrated to affect physical functioning and schoolwork. When severe, anemia causes fatigue and low energy level. Anemia can be successfully treated with a medication which must be given by injection under the skin at regular intervals (adjusted according to measurements of the red cell count in the blood). Almost always, oral iron medication must also be taken.
POOR GROWTH: Kidney function less than 50% of normal is frequently associated with slower than normal growth. All of the complications of CKD can contribute to poor growth. In infants and young children, feeding problems are common; they require intensive treatment to make sure that the child receives adequate nutrition to grow. Even if all complications are properly treated, growth may remain slow. If this is the case, daily injections of growth hormone have been shown to be safe and effective to accelerate growth.
When progressive CKD is approaching the stage 5, planning & preparations are necessary for either dialysis or kidney transplant, as kidney function below 10% of normal is frequently associated with symptoms of “uremia,” which can b e l ife-threatening. Thus, either dialysis or kidney transplantation is undertaken when declining kidney function reaches this point. There is universal agreement among pediatric nephrologists (and kidney transplant surgeons) that successful kidney transplantation is the preferred treatment (rather than dialysis) for end-stage renal disease. However, should kidney transplantation not be available in a timely fashion, dialysis is the alternative treatment. The figure below describes the relationship between dialysis and transplantation, as alternative treatment for ESRD. Although the risk of death while receiving either treatment is very small, it is significantly greater than that of healthy infants, children and teenagers. Note that one enters the cycle with Chronic Renal Failure (CRF.) Repeated transplantation becomes less of an option as available deceased donor kidneys are in very short supply (the shortage gets worse every year) and a recipient may not have a second or third living donor available when needed.
There are 2 types of maintenance dialysis (described below).
Both remove accumulated waste chemicals from the blood, a job that the failed kidneys are no longer able to perform adequately. While either type of dialysis sustains life, the patient still has severe kidney failure, with all its complications that require drug treatment & dietary restrictions. Long-term dialysis is difficult and stressful, but possible. However, successful kidney transplantation offers a superior quality of life, compared to either form of dialysis. ONE kidney from either a living donor or deceased donor (see below) is sufficient to replace the function of the patient’s own two failed kidneys. The risks and benefits of each of these treatment choices will be discussed below, and compared to each other.<
1. HEMODIALYSIS (HD):
Blood is purified by an “artificial kidney” machine as it circulates outside the body. Typically, HD is done in a hospital or “dialysis unit” three times per week; each “treatment” is between three and four hours, during which the patient is confined to a chair or bed. In between treatments, severe kidney failure is still present, so the diet has to be very restrictive (see below – compare to peritoneal dialysis). Advance preparation for HD involves making a surgical connection, called a fistula, between an artery (blood vessel that delivers blood from the heart) and a vein (blood vessel that returns blood to the heart), usually at the wrist. The fistula allows arterial blood to be delivered directly to the veins of the forearm. This is a minor operation, typically requiring a day or two in the hospital; other than a small scar, the fistula does not affect the patient in any way. Over about two to three months, the veins enlarge enough to be easily punctured for each HD treatment. Two intra-venous needles & tubing (one to deliver blood from the patient to the machine and one to return blood to the patient from the machine) allow attachment to the HD machine, as described below.
If there is not enough time for a fistula to be created and “mature” to be usable, emergency HD can be done by surgical insertion of a plastic tube (catheter) into a large neck vein. The other end of the catheter is outside the body on the upper chest wall, allowing attachment to the HD machine. Unfortunately, while this method is attractive because it does not require needle punctures, catheters frequently become infected; thus, catheter HD is considered only a temporary measure.
2. PERITONEAL DIALYSIS (PD):
Instead of using an “artificial” kidney to purify the blood, this method of dialysis uses the lining (membrane) of the peritoneal cavity, which holds the abdominal organs, to filter the blood. One end of a permanent catheter (plastic tube) is surgically placed into the peritoneal cavity; it exits the body through the wall of the abdomen, and about 6-12 inches of tubing lies flat under a simple dressing, taped to the skin of the abdomen, under your clothing. The operation is a minor one, and patients can be discharged within a day or two. On occasion, the catheter does not work properly and has to be repositioned or surgically removed & replaced.
After a week or two of healing, the peritoneal catheter is ready for use. A plastic bag of salt and sugar solution (like intra-venous “IV” fluid) is instilled into the peritoneum for an hour or two; waste chemicals leave the blood and enter this fluid by osmosis. At regular intervals the fluid is drained out, and new fluid is instilled. This process is done repeatedly during nightly sleep by a small “cycler” machine. Nightly PD allows freedom during the day for school & other activities. Because PD is performed every night (for 10-12 hours), the diet can be more normal, as waste chemicals & fluids the child drinks are being eliminated more frequently than HD which is only three times per week, 3-4 hours per treatment. The PD staff at your dialysis center will train the patient/parent during the course of about one week to perform PD on their own. The cycler machine is portable and can be taken on trips & vacations. While PD is a home treatment, performed by parents and capable children/teens, HD must be done in a hospital setting by professional nursing staff. The most important potential complication of PD is infection (peritonitis), due to bacterial contamination of the PD system. It is usually characterized by abdominal pain, fever, and cloudy drainage fluid and is treated with antibiotics. Even with the most careful “sterile technique,” peritonitis can occur. At any time, the catheter may require removal and replacement for complications such as poor drainage or infection that is resistant to antibiotic therapy. However, assuming that the patient/parent is well trained & performs PD as instructed, clinic visits are only about once each month. Like maintenance HD, PD does not “cure” end-stage renal disease (ESRD); it only removes enough waste chemicals and excess fluids to sustain life. Only successful kidney transplant restores kidney function to normal.
Our body can function normally with only one healthy kidney. Kidney transplantation is an alternative treatment for ESRD, not a cure. However, a more normal quality of life is possible with successful kidney transplantation. The timing of kidney transplantation is up to the patient. Some are reluctant to undergo transplantation and choose maintenance dialysis (HD or PD); then, after weeks, months or even years, because of the accumulation of dialysis or kidney failure complications, the patient-physician team may decide upon transplantation. Others are convinced that transplant is for them as soon as possible. When there is a living donor available (see below), arrangements can be made for transplantation at a time convenient for both the donor & recipient, before dialysis would become necessary.
There are 2 types of kidney donors (a person that donates or gives a kidney):
1) Living Donor – usually a blood relative, such as a parent or sibling over the age of 18 years. First, such a person must come forward and volunteer to be considered as a potential donor. The donor-recipient (the recipient is the ESRD patient who is to receive the kidney) pair must have a compatible blood type (A, B, AB, O) and the blood of the recipient must have a compatible reaction with the white blood cells (lymphocytes) of the donor. Both the blood group and “cross-match” tests are done with simple blood samples from each person. Often several family members volunteer to donate, but one or more may be eliminated by these tests. While more than one potential donor may be compatible by the blood tests, only one is selected (either by the family’s choice or by the transplant team) to undergo medical evaluation. This involves out-patient blood & urine tests, as well as a kidney sonogram (ultrasound) to see the size, shape & location of the potential donor’s kidneys. Lastly, a CT scan with dye injection is done to show th e l ocation & number of kidney blood vessels. If any abnormalities in any of the tests occur, that potential donor is eliminated. Then if another potential donor is available, that person undergoes evaluation. If all potential family donors are eliminated, or no one is available in the first place, or the potential recipient does not want a family member to be a donor, the potential recipient goes on to the deceased donor transplant waiting list. Each transplant center maintains its own list, but all centers participate in a nationwide computerized registry to allow equitable distribution of deceased donor kidneys to all who need them.
2) Deceased donor – a person who is brain dead (usually someone who has previously been healthy, then suffers head trauma, such a gunshot, or other accident, or brain hemorrhage). After the declaration of brain death, and if the person’s family agrees to donate his/her organs, this person is maintained on a breathing machine (respirator) until the organs are surgically removed in the operating room. The breathing machine is then turned off. The deceased donor is tested for all contagious & communicable diseases, such as AIDS. The organs are distributed to potential kidney transplant recipients according to blood group compatibility, how closely the “tissue match” is between the deceased donor and the potential recipient, and th e l ength of time that the potential recipient has been waiting on “th e l ist” for a kidney. This process is computerized on a national basis. We ask that blood samples be sent to our Tissue Typing laboratory every two weeks so that a fresh sample is always available to “cross-match” against potential deceased donors. If the potential recipient happens to have antibodies (special immune system proteins in the blood) against that specific deceased donor, that recipient cannot receive a kidney from that donor. Kidneys can be preserved for many hours, allowing transportation across the country, if necessary. However, th e l onger the time from removal of the kidney from the deceased donor until transplant into the recipient, the greater the risk that the kidney will not function right away. This condition is called delayed graft function (DGF) and complicates the recipient’s management. Potential recipients can be called at any time of the day or night to be admitted to the hospital for deceased donor kidney transplant surgery.
The TRANSPLANT OPERATION usually takes 4-6 hours. The recipient’s own kidneys may be removed at the same time, but only if there is a specific reason; this will be discussed with the recipient’s family before the surgery. The new kidney is placed either inside (infant) or outside (older child) the peritoneal cavity in the lower abdomen. If there is a PD catheter, sometimes it is removed at the time of transplant surgery; sometimes it is removed a few weeks later. When the recipient is asleep, intra-venous (IV) tubes are placed, and a tube is placed in the bladder (Foley catheter) to drain urine. Immunosuppressive drugs are given during surgery.
The day following the transplant operation, a kidney (renal) scan is done to evaluate the transplant blood flow & function. It will also identify complications of the transplant surgery. This test, done in the Nuclear Medicine Dept., involves the IV injection of a tracer (tiny) amount of radioactivity into the blood. Radioactive urine is made by the transplanted kidney, making it visible to the imaging camera. This test may need to be repeated periodically. An ultrasound (sonogram) of the new kidney is also done routinely within the first few days after the transplant operation for the same reasons as the scan. Blood & urine tests are done daily to monitor the new kidney for signs of rejection. About 1/3 of deceased donor kidney recipients will have DGF (the kidney does not function for days and sometimes weeks, so that the patient needs dialysis until the kidney “wakes up”). Rarely, this happens with living related donor kidneys.
Most recipients are able to eat & drink the day after surgery, and start immunosuppressive medications to prevent rejection of the new kidney. Sometimes these medications are given intravenously as well. These medications are discussed in more detail later. By the third or fourth days after surgery, most recipients are feeling very well, walking up & down the hallway. The IVs & the bladder catheter are out, and they are on a regular (sometimes low-salt if there is hypertension) diet. If there are no complications (particularly rejection &/or infection), the recipient is discharged between the 5 th and 7 th day, assuming that they hav e l earned all their medications!!!
As the risk of rejection is highest in the first days & weeks after transplantation, monitoring for rejection must be frequent. Typically, recipients are seen in Transplant Clinic twice a week for the first month or so, then once a week for the next month or two, then every other week, then once a month by the end of the first year. During the second year, visits are usually every other month & usually every third month by the third year. This schedule is only a guide & is individualized for each patient, depending upon the circumstances.
How successful is kidney transplantation? It is very unlikely that a single transplanted kidney will last an infant, child or adolescent for a normal life span. A relatively small proportion of kidneys fail (the patient returns to dialysis) in the initial days, weeks or months after transplantation due to acute rejection (defined below) or surgical complications. Close to 90% of deceased donor kidneys and more than 95% of living related donor kidneys are functioning one year after transplantation. As the years pass, more and more kidneys fail slowly due to chronic rejection (defined below). For deceased kidneys transplanted this year, we predict that ½ or 50% of them will function 10-15 years; for live related donor kidneys, 20-30 years.
The body’s normal immune system is designed to detect “foreign invaders” such as germs. This protects us all so we don’t get sick and die from infections. However, this same immune system will reject (attack and destroy) a “foreign” organ, such as a kidney from another person! Immune cells are born every second of every day as long as we live, so the transplant recipient MUST take MEDICATIONS to PREVENT REJECTION every day; without them, the new kidney will be rejected !!!
Currently, most transplant recipients receive at least two immunosuppressive medications. Each drug works in a different way on the body’s immune system; together, they provide the best therapy to prevent acute rejection. Once acute rejection is diagnosed (see below), more intensive immunosuppressive drug therapy (higher doses and/or additional medications) must be used to treat this condition so that the new kidney is not destroyed by the recipient’s immune system. However, this more intensive treatment makes the recipient more susceptible to complications of immunosuppressive drug therapy, such as infection. Thus, the best treatment isprevention !!!
Unfortunately, there is no way to determine the best combination of immunosuppressive medications & their doses for each individual patient . From large scale clinical trials, we know that most patients usually do well on the drugs & doses that we currently recommend. However, if acute rejection does occur (assuming that medications have been taken as prescribed), this means that we have not achieved enough immunosuppression & thus different drugs or a higher dose is necessary to prevent more rejection. On the other hand, if there has been a serious infection, this means that the amount of immunosuppression has been too much & we adjust the selection of drugs & their doses appropriately.
Another potential complication of immunosuppressive medications is the development of cancer, but the risk is well under 1%.
The two most common and important complications of kidney transplantation are rejection and infection(s).
These two are related, as not enough immunosuppressive drug therapy will result in acute rejection, but too much will allow germs to invade the recipient’s body, because the immune system has been weakened by immunosuppressive drug therapy.
There are 2 types of rejection.
1. Acute Rejection is the body’s initial response to the new kidney. About 20% of all deceased kidney transplant recipients have at least one episode; about 10% of all living related donor kidney transplant recipients have at least one episode. An important cause of acute rejection is failure to take immunosuppressive drugs as prescribed, every dose, every day! Typically, acute rejection is characterized by worsening kidney function (monitored regularly by blood tests – particularly serum creatinine, a measure of how well the kidney cleans the blood and eliminates waste in the urine.) Patients undergoing acute rejection rarely have complaints! Almost always, this condition is detected by regular blood test surveillance, thus the need for frequent testing, even though the patient feels well. Often, a scan and/or ultrasound will be done to exclude other conditions that might cause worsening kidney function. A biopsy of the kidney transplant is done to examine a small sample of the kidney tissue under the microscope. The treatment is more intensive immunosuppressive drug therapy (intra-venous high dose “steroids” for several days &/or other drug treatment that may require up to two weeks in the hospital). There are three possible outcomes of acute rejection treatment. Rarely, treatment fails and the kidney is rejected; it is usually surgically removed and the patient resumes dialysis. If acute rejection is mild and treated early, full kidney function is regained. However, in some cases, treatment is only partially successful, and kidney function does not return to the pre-rejection level. The more acute rejection episodes there are, the mor e l ikely it is that the kidney will not last long.
2. Chronic Rrejection is the second type of rejection. This is a slowly progressive loss of kidney function, diagnosed by a slow and gradual rise in serum creatinine level, often with hypertension. Sometimes a kidney transplant biopsy is done to distinguish between acute and chronic rejection. This is important, because acute rejection will frequently improve with more intensive immunosuppressive drug therapy, but chronic rejection will not. Overall, chronic rejection is the most common reason for failure of a transplanted kidney. The two most common reasons for chronic rejection are 1) one or more acute rejection episodes, with loss of kidney function each time, and/or 2) failure to take immunosuppressive drugs religiously . If and when the patient resume dialysis, they are eligible for a second, third, etc transplant; however, after the loss of a kidney due to rejection, it is often harder to find another kidney for that recipient.
Infection is an important complication of the immunosuppressive drug therapy which is necessary to prevent (or treat) rejection. The risk of infection and its seriousness are directly proportional to the intensity of immunosuppressive drug therapy. To minimize the risk of certain infections, all transplant recipients take at least three preventive or prophylactic antibiotics. These are described in the MEDICATIONS section. Compliance with prophylactic antibiotics every dose, every day is also very important, because if serious infection occurs, often immunosuppressive drug therapy must be stopped to allow the body’s immune system to fight off the infection. This can lead to acute rejection. At this point, it should be obvious that compliance with all medications is critical for short and long-term transplant success.
Hypertension is a common condition seen after kidney transplantation. Usually there are no symptoms, and most patients simply require blood pressure medication (usually similar to the blood pressure medications many patients need prior to transplantation). More than half of all kidney transplant recipients require blood pressure medications within the first few weeks after transplantation, but for many patients this is only temporary. Your doctor will prescribe the proper medications as needed to control blood pressure.
For complications of progressive Chronic Kidney Disease and End Stage Renal Disease:
Bone disease (calcium & phosphorous )
1) Renagel, Renvela, Phos-Lo or calcium carbonate (e.g., TUMS) to prevent absorption of phosphorous in foods. Must be taken with each meal. The doctor regulates the amount based upon blood level of phosphorous. If blood phosphorous level is too high, the patient should reduce intake of foods high in phosphorous, such as dairy products &/or increase this medication.
2) Rocaltrol (calcitriol), Zemplar, or Hectoral, which are special types of vitamin D to help prevent loss of calcium from bones<
Acid accumulation – Bicitra or sodium bicarbonate pills to “buffer” this acid. The dose depends upon the blood level of bicarbonate.
Hypertension – There are dozens of safe & effective medications to lower blood pressure. Usually your doctor will start with one medicine and increase the dose until blood pressure is controlled. However, many patients require more than one blood pressure medication to achieve this goal. In addition, many patients require a “water pill” such as Lasix (furosemide) to control blood pressure.
Anemia – Erythropoetin (Epogen, Procrit or Aranesp) injected under the skin at regular intervals to stimulate the bone marrow to make new red blood cells.
Growth Retardation – Growth hormone injected under the skin every day to increase the rate of growth.
For Transplant Recipients:
Immunosuppressive Drugs: Most transplant recipients take multiple immunosuppressive medications: the most frequently used are: Cellcept, Prograf and Rapamune. Unfortunately, in addition to increasing the risk of infection, each of these medications have side-effects. Most are proportional to the dose and duration of therapy:
CellCept (Mycophenolate Mofeteil): side effects may include nausea &/or diarrhea, decrease in white blood cell count (monitored regularly at each transplant office visit to allow dosage adjustment).
Prograf (Tacrolimus, FK506): side-effects may include high blood sugar, and kidney function may temporarily get worse if the dose is too high. Dose is adjusted based upon concentration measured in blood immediately prior to morning dose (trough level.)
Rapamune (Rapamycin, Sirolimus): the main side effect is a temporary increase in blood triglyceride (a type of fat which circulates in the blood, like cholesterol) concentration. Dose is adjusted based upon concentration measured in blood immediately prior to morning dose (trough level.)
Prophylactic Antibiotics (remember that immunosuppressive drugs will make you more susceptible to infection; these medications will help reduce that risk)
• Valtrex (Valacyclovir) to prevent herpes simplex (fever blister)
• Valcyte (Valganciclovir) to prevent cytomegalovirus infection
• Bactrim or Septra (Trimethoprim / Sulfa) to prevent other infections
ADHERENCE: This is a term that is used to describe whether or not the patient is following their recommended treatment plan. Are medications being taken exactly as prescribed? Since most kidney failure and transplant medications have no obvious effect on any symptom or complaint, missing a dose will not result in any difference in the way the patient looks or feels. However, the effect of missed doses accumulates and eventually results in unwanted and dangerous health consequences.
Here are 3 examples of the importance of compliance:
1. When kidney failure reaches an advanced stage, most patients require “phosphate binders” to prevent the absorption of phosphorous in foods. Without this medication, blood phosphorous level increases and this causes silent destruction of bone. The patient feels the same, whether or not the medication has been taken as prescribed, after each meal.
2. Blood pressure medications are very important to preserve kidney function and prevent heart muscle injury. However, since high blood pressure is generally without symptoms, forgetting or missing doses is tempting.
3. Drugs are prescribed for kidney transplant recipients to prevent rejection. Because the patient cannot see or feel any effect, it is easy to neglect a dose here and there. The patient feels well and the temptation to miss doses is strong for this reason. However, this is the most common cause of kidney transplant rejection after the first 3-6 months, particularly among teenagers . New immune cells are being born in the body every day. They have never seen this “foreign” organ and will attack it (rejection) unlesssuppressed by drugs. Thus the term immunosuppressive drug therapy. Transplant recipients must continue to take these medications indefinitely , as long as the kidney is functioning.
Taking your medicines exactly as prescribed is one of the few things that you can do to improve your health (avoid hospitalization, worsening of your condition, etc…) today and in the future.
Things to remember about your medications:
- Name – remember that many drugs have two or more names. One is the chemical or generic name; the other is the manufacturer’s name. If several pharmaceutical manufacturers make a drug, each will have a name for the medication. For example, aspirin may be called Bayer, Anacin, Excedrin, etc. Always ask your doctor andpharmacist to clarify the name of the medication.
- Purpose – you should be informed why a drug is being prescribed by your physician. Your pharmacist should also explain this information to you.
- Side effects – what are they and how likely are you to experience them? Don’t be frightened by a long list of possible side effects. Although most drugs have manypossible side-effects, the actual risk of any of them is usually very small. Your physician and pharmacist should also be aware of any drug allergies or possible interactions between drugs you are taking.
- Dose – drugs are prescribed in a strength (an amount per pill) or concentration, if a liquid. Become familiar with the terms milligrams (mg) and milliequivalents (meq). You should learn the strength of each medication.
- Directions – you must also know the number of pills or amount of liquid, as well as the how often they are taken. For example, Phos-Lo tablets, 667mg each, take two after each meal OR tacrolimus (Prograf is the brand name), 1mg capsules, one twice a day (or every 12 hours).
- Organization – if you think, “I won’t forget,” you are mistaken. Everyone frequently forgets things they want to remember. A pill tray with days of the week and several wells for times of the day is extremely useful. Just as you are unlikely to forget your clothing or house keys, you must remember your medications without fail in the same way.
- Be honest with yourself and your health care team – tell your doctor or nurse if you are having a hard time remembering your medications. Many patients are embarrassed to admit non-adherence. You are entitled to ask if there are alternative medications if you are not happy with current drug therapy. If you are “not responding to medication” because you are not taking them as prescribed, the health care team will question the diagnosis and treatment and is likely to subject you to more testing and perhaps more dangerous drug therapy!
- To help you be adherent (remember which pills to take and when) – try www.epill.com