I have been a Registered Nurse for 12 years and have worked as an outpatient Dialysis Nurse since 2017. Hemodialysis is a treatment that occurs three times weekly for adults with End-Stage Renal Failure or Acute Kidney Injuries. The treatment to keep these patients alive is effective but also life-changing. Let’s talk about how to handle this new life on dialysis.
What is End Stage Renal Disease?
End Stage Renal Disease, commonly called ESRD, is the loss of regular kidney function. According to the American Kidney Fund, more than 557,000 Americans are on dialysis, and kidney disease is growing at an alarming rate.
It can show symptoms in several ways: swelling (edema in medical terms), shortness of breath (due to fluid accumulating in the lungs), decrease in urination and increase in creatinine (a waste product in the blood that comes from the breakdown of muscle tissue and the digestion of protein in food) levels.
A primary medical doctor can usually check kidney function during lab testing and refer patients to a Nephrologist (a kidney specialist). However, it is not unusual for a patient to have no idea that kidney failure is imminent.
I have had many patients who had no idea they were at risk for kidney disease. It was a total shock that their future involved hemodialysis and/or waiting for a kidney transplant. They experienced shortness of breath and went to the hospital, and the next thing they knew, hemodialysis three times a week for 3-4 hours was necessary to continue living. The average wait time for a kidney transplant in New York State is five to seven years. What a massive change in life for the patient and the family.
Causes of Kidney Failure
The kidneys complete several functions in the human body that are vital for health: filtering waste from the blood, creating urine, aiding in hemoglobin (blood levels), and working with the parathyroid gland to regulate PTH (parathyroid hormone) and calcium levels.
The leading causes of kidney failure are uncontrolled high blood pressure and diabetes. A form of kidney failure called Acute Kidney Injury, also known as AKI, presents after a health event like low blood pressure, kidney blockage, or kidney damage. AKI can sometimes be managed without dialysis or require temporary treatment. However, a diagnosis of End-Stage Renal Disease does require hemodialysis, the treatment that cleans the blood and removes fluid from the body due to kidney failure.
What Happens Next? Hemodialysis
Typically, the patient identified with kidney disease in the hospital will receive some dialysis treatments. You may notice a nurse entering the room with a large machine and placing a catheter on the person’s chest to access the blood. A central venous catheter (CVC) can be placed in the neck or chest by an interventional radiologist or vascular surgeon to allow hemodialysis to be administered. The patient will then be discharged home and set up to go to an Outpatient Hemodialysis Center.
The most common outpatient dialysis treatments are required three times a week for 3-4 hours at a time. As mentioned above, patients usually start dialysis with a CVC temporarily, but permanent access is required. These blood accesses are called AV fistulas or AV grafts. A Vascular Surgeon creates AV (arterial-venous) fistulas, which require about six weeks to be ready to use. AV Grafts incorporate a rubber tuber under the skin to connect arterial and venous blood and can be used quickly.
The best option is an AV fistula, but an AV graft will be recommended if that is not possible due to the patient’s veins. Both options are better than a CVC because of the risk of infection. Patients with CVCs cannot take a regular shower because the port cannot get wet. The surgeon will map the patient’s veins and recommend the best option.
Typically, two major companies provide outpatient dialysis services, but many smaller companies also offer outpatient treatment. Before discharging the patient, the hospital will ensure that the patient is accepted into an outpatient center. The patient and family will then work with the hospital and center to schedule the best transportation service options.
What to Expect While Your Loved One is On Dialysis
Outpatient hemodialysis becomes a part-time job for the patient and family members, but you will also gain a part-time family. I have treated many patients for over five years, and we spend 12+ hours a week together. This creates a different relationship between the nurses, technicians, nephrologists, and the patients.
We know when something isn’t right at home, physically or mentally. While coming to a clinic so often is a burden, a positive part of dialysis is that patients interact socially. They will have access to a social worker and dietician weekly. I don’t know of any other field where the doctor comes and sees you personally at least once a week to check on the patient and their lab work. As healthcare workers, we understand how hard it is to be on dialysis, and we try to provide the most care and support that we can.
What Can You Do as a Family Member?
Take it step-by-step with your loved one and clinic. First, pick a dialysis center and then select a time that works for transportation, the patient,, and the family. Usually, there are “shifts” in dialysis: the first shift starts at 5 a.m., the second shift at 9 a.m., and the third shift at 1 p.m. Occasionally, clinics offer a a fourth shift around 5 p.m. Usually, pickup is four hours after treatment starts. (These times vary by clinic.)
Loved ones can help make the treatment as comfortable as possible. Usually, dialysis centers provide a “Welcome Bag” with a neck pillow, headphones for the TVs provided, and a blanket. If any of these are not provided, consider buying them. Your loved one has to sit through 3-4 hours of treatment, so anything to make the time go by is helpful. Many patients’ children set up audiobooks, music, or iPads with movies to occupy their mind during treatment.
Next, help get them on a transplant list. The social worker at your dialysis clinic will work with the patient to talk about at-home dialysis and getting them on a transplant list. Most of the hospitals in New York have a transplant team, and many patients will qualify for a kidney transplant. The wait in NY is usually five to seven years, but different options for kidney transplant can speed up the process. Help your loved one by scheduling the tests necessary to get on the list that the transplant team requires.
Lastly, build a relationship with the team that takes care of your loved one. We care so much for our patient,s and as healthcare providers, we want to make your loved one as comfortable as possible. The more you communicate with us, the more we can do to make this overwhelming treatment better. Tell us about anything at home, ask us for help, and let us know what we can do for you. Hemodialysis is life-changing, and we all genuinely want to make it better for our loved ones because we understand how hard it is for them. After all, we are with them every day.
