Insight into the tragedy of End Stage Renal Disease

Many healthy Americans wake up daily, planning their next big move. Some people may start each day by deciding what stocks to invest in. Others make plans on how to land the job of their dreams or how to get into an Ivy league college. Many make plans on how to get that perfect someone to notice them, how to get the promotion that has been eluding them or how to get a pay increase. Most of these people with big dreams work outside the health care setting. Often times, they have no contact with sick or disabled people. Consequently, many have no concept of what it means to be straddled with a chronic health condition such as End Stage Renal disease (ESRD).

Having ESRD means numerous hours lost each week, issues with being transported to or from a dialysis center, complications during treatment, high risk of infection and severe diet, fluid and other life restrictions.

As Renal Nurse, I have witnessed the suffering of many of these patients over the years with great empathy.

End Stage Renal Disease and Treatment

End Stage Renal disease is a condition whereby the kidneys do not work or have limited function. Normal kidneys help the body to form urine, removes waste products and toxins, regulate acid base balance (the percentage of acid products to alkaline products). Normal kidneys also secrete a hormones that regulate our blood pressure, regulate calcium levels in our body as well as red blood cell production.

The kidneys of people with ESRD cannot perform these functions. Hemodialysis (Dialysis) compensates for these failed functions. People with ESRD are considered disabled. People who start hemodialysis are usually required to remain on this treatment for the rest of their lives.

During hemodialysis, a machine is programmed to do the work that the non functional or poorly functioning kidneys are unable to do. During hemodialysis, blood is removed gradually through one port of a catheter or shunt ( and simultaneously returned to the body via one port after processing ) from a patient’s body. A dialysis catheter is a small tube inserted into a vein with two lumens or ports. One lumen of catheter is used for pulling of blood from the bdy and the other for returning blood to the body. A shunt is large vein or an artificially created opening under the skin (with a venous and arterial end). Caregivers access the blood supply by placing two large needles through the skin into the shunt.

The hemodialysis machine pumps blood into a dialyzer (filter) for an average of 3 to 4 hours for gradual cleaning. The Dialysis Filter is made up of a special membrane that allow certain types of impurities and products to pass through. Water and waste products are products that are removed from the body during dialysis. Artificial hormones or medications are often added to dialysis fluids or the machine as needed based on a patient's blood lab results.

Main Causes of ESRD and Statistics

The main causes of End Stage Renal disease are High blood pressure and Diabetes. High blood pressure that is uncontrolled, results in End Stage Renal Disease because the high pressure within the walls of blood vessels destroys kidneys tissues. High blood sugar from diabetes also causes the tissues with the kidneys to deteriorate. High levels of prescription drugs as well as street drugs within the body also cause damages with the kidneys. Other causes are urinary tract infections and kidney stones. Polycystic Kidney Disease (PKD) is the only genetic condition that causes renal failure. Patients with PKD have cysts that are enlarged over time and destroy the tissues of the Kidneys.

According to the National Kidney and Urological Disease Clearing House (NKUDIC): One in 10 adults or approximately 20 million Americans have some form of Chronic Kidney Disease; 398,861 with ESRD were being treating with dialysis in 2009; The Mortality rate is approximately 10, 478; The 5 year survival rate for patients on dialysis is 38.5%; The annual costs to the United States in 2009 for treating ESRD was $40 Billion dollars. [1]

The Three Day Ordeal that cannot be cured by Time Management.

Each day of dialysis may take a toll on a patient’s time. Nephrologists (doctors who care for patients with ESRD) usually prescribe a three day schedule for an ESRD patient so that these patients who no longer have working kidneys, will have the excess fluids, toxins and impurities removed from their bodies on a regular basis.

Dialysis patients are tied up doing treatment related activities three days per week, up to 6 hours each day. When these 6 hours are compared to the 8 hour work day that most Americans with regular jobs are required to work, it is easy to understand why there is a high rate of depression among ESRD patients. Most people unfamiliar with dialysis often focus on the three to four hours requirement without seeing the larger picture. The three to four hour procedure usually consumes approximately 5 to 6 hours of the dialysis patient’s day for various reasons.

Transportation Problems

Many dialysis patients rely on other people to transport them to a dialysis center for treatment. Many patients who travel to dialysis treatment centers often do not travel by car. A large percentage of patients do not have cars because many give up their jobs after becoming disabled. Some patients may choose to work part time as the dialysis schedule seriously impedes the ability to work a 40 hour work week. This often leaves little money to pay car insurance.

Some patients may choose not to drive due to complications that may occur while driving home from a dialysis treatment. One such complication is low blood pressure. As such, many dialysis patients are at the mercy of others in getting to and from their dialysis treatment centers.

Many Dialysis patients rely on ambulance services to transport them to a Dialysis clinic. The Ambulance services usually transport several patients to various clinics at the same time. As such, patients are not guaranteed to be picked up at exact desired times while the ambulance services are making their rounds picking up or dropping off other patients. After the dialysis treatment is completed, it is not uncommon for an ambulance to be late to pick up a patient. It is not uncommon for ambulance services to travel to other destinations before returning to retrieve a patient from the treatment center to transport them back to their homes.

I have sat with many dialysis patients after hours who have been forced to wait for extensive periods in dialysis centers for their ambulances to pick them up after their treatments were completed.

Additionally, during severe snow storms or other adverse weather conditions many dialysis patients have no way of getting to a treatment center. Many usually end up in emergency rooms with adverse symptoms that require aggressive interventions to save their lives.

A Machine May not be Ready due to Patient Volume

Due to the high incidence or ESRD in patients, there are more patients who need dialysis than the numbers of machines and chair available to accommodate them. As such, in many instances, a dialysis patient who is scheduled to begin a treatment at a specific time may not always get placed on the dialysis machine on time.

Many dialysis centers may have limited amounts of machines that may be shared by as many as 45 patients. Dialysis clinics usually accommodate their patient volume by scheduling patients according to shifts. Common time schedules for shifts are 5AM, 11 AM and 5pm. As such, if there are only 15 machines at a treatment center, there will be three shifts to accommodate all patients.

Once paced on a shift, a patient is required to stay on that shift permanently. Changing shifts and showing up hours after a treatment is scheduled usually creates friction. Dialysis patients who arrive for their treatment and find other patients seated in their chairs are usually not happy. This may happen if the prior patient arrived late for his treatment. Patients who are non compliant with their time schedules can cause a chain reaction of problems for other patients as well as staff.

A Machine may not be ready Due to Patient Complications

Many complications may occur during a dialysis treatment that may extend a patient's day. On many occasions, a patient on an earlier shift may still be seated in a dialysis chair when the another patient arrives to get his or her dialysis treatment. This may occur if the prior patient developed a complication during treatment. A complication may also occur at the end of treatment that makes it unsafe for a patient to be immediately removed from his or her dialysis chair.

Common complications during Dialysis are low blood pressure, severe cramping, nausea and vomiting and clotting of the blood lines. Low blood pressure may occur during the fluid removal process. Patients who needs excess fluid removal during a short interval may experience a sudden drop in their blood pressure. The blood pressure may also drop if the patient took his or her high blood pressure medications too close to the scheduled treatment time. A patient with a low blood pressure may be given medications, a pause in treatment, or other interventions until his or her blood pressure becomes stable. Many Patients have coded during dialysis due to low blood pressure requiring CPR. Patients who observe CPR being performed on other dialysis patients usually become very uncomfortable.

A patient may experience cramps (leg, arms or abdomen) due to the rapid fluid removal or change in electrolyte balance. Electrolytes are compounds such as sodium, potassium, bicarbonate and chloride. These cramps are similar to the cramps that an athlete gets when engaging in exercise for long periods of time. The nurse may provide medication, a leg massage or hold the treatment until the cramps disappear. Nausea an vomiting may occur due to a drop in blood pressure, or the shift in fluid from the gastrointestinal (GI) tract.

The blood being pumped into a patients hemodialysis blood lines (the lines that transfer the blood from the body to the filter and back to the body) may clot when there is not enough heparin, or no heparin present in the blood lines. Heparin is an anticoagulant placed in the blood during dialysis to prevent it from clotting during circulation outside of the body. If the patient gets insufficient heparin, or has no heparin ordered during treatment due to bleeding problems, the blood may clot interfering with the treatment process. These complications may require the treatment to be temporarily discontinued and then restarted thereby increasing the amount of time that the patient spends in the dialysis center. These complications can also occur at the end of the treatment delaying the start of a new treatment.

A dialysis patient may also experience other complications at the end of dialysis such as increased bleeding from his access site. The excess bleeding may occur after the needles are removed from a shunt. This requires application of pressure to the access site by either staff or patient. The care giver may be tied up dealing with this sort of complication prior to moving on to initiate the dialysis treatment of an incoming patient.

High Risk of Blood Borne Infections

Dialysis patients are at high risk for blood borne infections. Blood borne infections are infections that are transmitted from the infected blood of one patient to another. Some types of blood borne infections are Hepatitis B and Hepatitis C.

A vaccine is available for Hepatitis B. Most Dialysis patients usually accept the Hepatitis B vaccine. The Hepatitis B vaccine prevents patients who are not yet infected with the hepatitis B virus from acquiring it. There is no vaccine available Hepatitis C. Hepatitis C is a viral infection of the liver. People with Hepatitis C may have symptoms that include joint pain, fatigue, sore muscle, yellowing of the skin and eyes and dark urine. Hepatitis is still a problem in dialysis centers.'

Many patients who are admitted to treatment centers are later diagnosed with Hepatitis C after many dialysis treatments. All dialysis centers are not in agreement as to how to manage patients who have hepatitis C. A patient with Hepatitis C may find that at one facility he or she is treated in an isolation room. The same patient if transferred to another clinic may find that he is not isolated from others and may be dialyzed on dedicated machine (one machine for all patients with Hepatitis C) among the general patient population.

Additionally, despite infection control procedures in place, it is not uncommon to see overwhelmed health care workers going from machine to machine wearing the same pair of gloves.

Diet and Fluid Restrictions

Many healthy people turn to food when there are no other pleasures available to them. Dialysis patients do not get to enjoy these pleasures. Dialysis patients must watch what they eat and drink. Eating too much of the wrong food or drinking more fluids that recommended by their physician, could mean sudden trip to the emergency room with difficulty breathing or even death.

Dialysis patients are required to restrict foods that are high in sodium as this may affect thirst and increase their blood pressure. Foods high in sodium includes potato chips, bacon, cheese, pretzels and pickled foods.

ESRD patients are required to restrict foods high in potassium such as bananas, oranges, tomatoes, lemons and potatoes. High potassium levels may cause low heart rate leading to conditions as severe as cardiac arrest.

ESRD patients are required to avoid foods high in phosphorus such as milk and cheese, colas, yogurt, organ means whole grains. High phosphorus levels cause a decrease in calcium which can cause abnormal heart rhythm, congestive heart failure or lead to bone problems that result in fractures.

ESRD patients are also placed on fluid restrictions. Many patients with ESRD do not urinate and are unable to get rid excess fluids that they ingest until their dialysis machine does it for them. Consequently, many dialysis patients are constantly thirsty.

Those who don’t comply with their fluid restriction may find their legs severely swollen (edema) with indentations when touched. The lungs of dialysis patients may fill up with fluid causing severe breathing difficulties. Even worse, the excess fluid may prevent the heart from pumping effectively resulting in a condition known as congestive heart failure.

Other Restrictions

The life of a patient with ESRD is often filled with many limitations. Patients with ESRD are constantly aware that they may not be able to take an overseas vacation because there may be no dialysis clinic available for a dialysis treatment. While there are many treatment facilities in the United States, a patient may find that a dialysis clinic may not be close to a particular location in another state. Patients may choose to forgo their trips to prevent burdening others for help with transportation to a dialysis clinic. Moreover, while there are many advertised "dialysis cruises, " many patients with ESRD are unable to afford such luxuries.

A patient with on dialysis may not be able to take proper baths. Baths may cause a catheter to become wet. A patient with a dialysis catheter is usually advised not to get their dialysis catheter wet. A wet catheter places a patient at high risk of infection. This imposes a lot of difficulty as the dialysis catheter is usually placed in the neck or chest area of the body. Not being able to take baths may affect self image.

A dialysis patient may not be able to wear clothing that are too tight around the arm or the limb where the shunt is placed. This may constrict the flow of blood to the shunt causing it to fail. Patients with dialysis shunts are also advised not to lift heavy objects as this may also interfere with the proper functioning of the dialysis shunt. Not being able to lift objects may impact on the ability to continue a job.

Several patients faced with ESRD and the prospect of dialysis have chosen not to accept dialysis and have lost their lives.

Many patients with ESRD suffer from depression. Some become angry and withdrawn and become difficult to care for.

Conclusion

Unlike those of us who wake up daily planning to make our mark on the world, patients with ESRD wake up at least three days per week faced with the stress of having to travel to a dialysis center. They are constantly aware of all the possible complications of dialysis and the many restrictions placed upon their lives. For most, being a Dialysis patient means being constantly focused on compliance with their hemodialysis regimens and doing what is necessary to stay alive.

Reference

[1] http://kidney.niddk.nih.gov/kudiseases/pubs/kustats/

Updated 01/27/2014