Dialysis Patient Education: A Practical Guide Before, During and After Dialysis 

A dialysis patient encounters a number of crises such as bone and mineral disorders, cardio vascular complications, access complications, infection, anaemia, amyloidosis, depression, anxiety etc. Patient education helps to understand these complications along with their treatment options and seek timely medical help when necessary. 

The benefits of being ‘informed’ are:

1. Helps to know the way this disease progresses and to recognize the early signs of complications.

2. Encourages a patient to take better care of their own health and make timely lifestyle modifications or dietary changes.

3. Ensures stricter adherence to the treatment regimen for better medical outcomes. 

4. Helps to make informed decisions, voice concerns and needs for a more effective, comfortable and customized form of treatment. 

5. Patient education via support groups builds friendships and strong social connections which aid in maintaining emotional wellbeing and boost the morale of the patient to face dialysis with confidence.

GUIDANCE FOR A PATIENT TRANSITIONING TO DIALYSIS FROM ESRD

When a CKD stage 5 (end-stage renal disease ESRD) patient transitions to dialysis, several aspects need to be addressed:

1. Choosing Dialysis Modality: Comprehensive education covering the pros and cons about the two main types of dialysis i.e., peritoneal dialysis (PD) and haemodialysis (HD) needs to be given to the patient and his family. Choosing which modality to go with depends on:  

1. Personal lifestyle preferences. PD is done at home 3-4 times every day, does not involve placing needles, and requires a caregiver. Suitable training is given by the nephrologist’s team. HD is mostly done in a hospital-like setup by trained staff three times a week on an average.

2. Existing co-morbidities. Chronic hypotension, for instance, may interfere with vascular access creation for HD. Those with issues with the peritoneum may not be able to opt for PD.

c. Location of Centres providing HD

d. Cost factor  

2. Vascular Access: For HD, a vascular access involves surgically creating an arteriovenous fistula (AVF), arteriovenous graft (AVG), inserting a central venous catheter (CVC) as a temporary measure, or inserting a ‘permacath’ in the patient’s chest if unsuitable for fistula creation. For PD, a catheter needs to be inserted into the abdomen. 

3. Nutritional Counselling: Guidance on managing diet and nutrition to support overall health and optimize outcomes on dialysis is essential. 

4. Psychosocial Support: Often a new dialysis patient goes into complete denial mode and is unable to accept the disease. Support services to address the emotional and psychological impact of transitioning to dialysis can help ease the mental anguish and feelings of anxiety. 

5. Financial and Insurance Considerations: Financial implications of dialysis, including insurance coverage, potential financial assistance programs and eligibility for government schemes need to be reviewed as dialysis is an expensive treatment. 

6. Advanced Care Planning: Discuss with doctor about advance care planning, including preferences for palliative care or resuscitation criteria if required. 

Transitioning to dialysis represents a significant life change for patients with CKD stage 5. A multidisciplinary approach involving nephrologists, dieticians, nurses, social workers, and other healthcare professionals is essential to ensure a smooth process.

Important things to know BEFORE and DURING a dialysis treatment session:

BEFORE DIALYSIS

1. Schedule: Understand your dialysis schedule – the date and time - and arrive on time for a HD session. In case of PD, schedule sessions at regular intervals. Never skip a session as this may cause fluid accumulation in lungs and around the heart which can be fatal. 

2. Dietary Restrictions: A dietician must be consulted as there are limitations on fluid intake, sodium, potassium, and phosphorus intake. 

3. Medication Management: The dialysis staff must be informed of your current medications, comorbidities and allergies as they may have an effect on the session. .

4. Access Site Care:

 A fistula requires at least 6-8 weeks to mature before it can be used for dialysis. Ensure proper care and hygiene of the fistula, graft, or catheter to prevent infections. Any itching /redness/swelling /change in skin texture/loss or reduced fistula thrill needs to be reported to the technician before starting the session. Regular hand exercise as prescribed by the doctor must be done to maintain a strong fistula. 

5. Dry weight: 

Your weight is measured at the start of every session (called “wet weight”). “Dry weight” is the weight at which you feel comfortable, have good appetite, do not feel breathless, have normal blood pressure and oxygen levels with good sleep patterns, and is measured at the end of every session. 

6. Miscellaneous : 

Following MUST be reported to the staff before a session:

a) any scheduled surgery that may involve blood loss e.g., root canal

b) cough/cold/fever/pain/nausea/unusual feelings or symptoms

c) abnormal sugar levels

d) consumption of any high potassium foods between sessions

e) Breathlessness, low oxygen levels, chest pains

DURING DIALYSIS

1. Food and Fluid Intake : Food and liquid consumed during dialysis must be discussed with the doctor as symptoms like hypotension, nausea or vomiting may develop.

2. Monitoring Vitals: Vital signs, such as blood pressure and heart rate, will be monitored regularly during dialysis. Notify the dialysis staff of any discomfort/sweating or unusual symptoms.

3. Side Effects:  Report side effects such as nausea, vomiting, headache, heart palpitations, itching, feeling faint, sudden cramps anywhere in the body, or bleeding from access site. 

4. Machine values: Optimum pump speed should be between 250-300. If this speed is not achievable you may need to see a vascular surgeon.

5. Post-Dialysis Care: After the session: 

a) Follow the post-dialysis instructions including recommendations for food and fluid intake, diet, medication and access care.

b) Make sure the catheter is covered at all times and do not expose it to water to avoid infection. 

c) Loosen the tourniquet after 1-2 hours, check for any blood oozing and tighten if it persists. Ideally it should be removed within 4 hrs of dialysis termination. Rush to your clinic if the access site does not stop oozing blood.

STANDARD GUIDELINES FOR DIALYSIS PATIENTS 

1) Eat a high protein diet (approximately 1.2g/kg body weight per day). Protein supplements may be included as instructed by your doctor or dietician.

2) Fluid control & water restriction are essential to ensure adherence to dry weight between two sessions. Removing too much fluid routinely can result in sudden sharp cramps (esp. in lower or upper limbs), vomiting, severe headaches, nausea, heart palpitations, hypotension, sudden decline in sugar levels etc. 

3) Keep sugar, cholesterol, electrolyte levels in check. Test regularly at least on a quarterly basis and see the nephrologist. Include tests for Iron, parathyroid hormone, Vitamin B12, vitamin D, lipid profile at least bi annually. 2-d echo of heart, ECG and chest X-ray are to be done annually to rule out fluid accumulation around the heart and in the lungs.

4) Stay physically active. Walk for at least 30 minutes 4-5 times a week. Do some form of resistance or strength training to retain good muscle and bone health and prevent mineral bone disorders. 

5) Reuse dialysers and tubing fewer number of times as you can afford. 

6) Do not resort to ayurvedic or homeopathic medicines for any issues as these may cause unexpected and sometimes dangerous side effects. 

7) Adhere to all prescriptions. 

8) Ensure you are vaccinated for hepatitis B, pneumonia and influenza as per schedule.

9) Check the fistula “thrill” (the “buzzing feeling” that you get when you touch the fistula) at least twice a day. Any unusual swellings on access points (called “aneurysms”) need to be reported.

10) Stop smoking, avoid alcohol and learn to manage stress. 

11) Educate yourself about the basics of the dialysis process and how it is conducted. 

Sachin Rao 

Dialysis Warrior (DW)

(with inputs from DWs Farrokh Jijina, Viresh Gokavi, Pragati Anu, Dr. Bharathi Tejas and Ved Prakash)