Living With Dialysis: Routines, Travel and Support

The two main types

Haemodialysis (HD). Blood is pumped through a machine that filters it and returned to the body. It is usually done in a dialysis centre three times a week for about four hours (or at home with training and equipment in some places). Access to the bloodstream is through a fistula (a surgically joined artery and vein in the arm), a graft or a catheter in a neck or chest vein.

Peritoneal dialysis (PD). A soft tube (catheter) in the abdomen allows dialysis fluid to be put into the belly, where the lining (peritoneum) filters waste, and then drained. It is done at home, either by hand several times a day or by a machine overnight (automated PD). It needs a clean space, training and supplies, and suits some people who want to avoid travelling to a centre.

Which is best depends on health, home, family help, preferences and local services. The decision is made with the nephrologist; see chronic kidney disease home care.

A typical week on haemodialysis

• Dialysis days: travel to the centre, weigh in, vital signs, needle placement in the fistula, four hours of treatment, check-out. People often feel tired or washed out afterwards and need rest. Some feel dizzy, cramped or nauseated.
• Non-dialysis days: follow diet and fluid rules; do light activity; take medicines; attend to the access site.
• Monthly: blood tests, review with the nephrologist and dietician.
• Transport: plan a reliable lift to and from the centre; fatigue and dizziness after treatment make driving unsafe for the patient. Consider carers, taxi or community services. A wheelchair or walker may help; see wheelchair buying guide and rollator buying guide.
• Day bag: medicine list, an approved snack, warm clothing, a phone and charger, and spectacles.

A typical routine on peritoneal dialysis

• Several exchanges a day or an overnight machine: each exchange involves connecting, draining, filling and disconnecting under strict cleanliness.
• Training: by the dialysis nurse, with a home visit.
• Supplies: fluid bags, tubing and caps, stored in a clean, dry, cool place; a clean exchange area.
• Infection prevention is crucial: wash hands, clean the area, wear a mask if trained, never rush. Peritonitis (infection of the abdomen) is the main risk; report cloudy drainage, abdominal pain, fever or redness at the exit site the same day.
• Helper: older adults with poor eyesight, arthritis or memory problems often need a family member or nurse to help; see arthritis daily living gadgets.
• Power cuts: manual exchanges can continue; automated machines need power; ask the unit for a plan; see power cuts and older adults.

Caring for the access

Fistula or graft (arm) - Protect the arm: do not allow blood pressure measurement, blood tests, injections or tight clothing, watches or jewellery on the fistula arm; carry a card. - Check daily: feel for the "thrill" (a buzzing vibration) and listen for the whooshing; if it is absent or weak, call the dialysis unit at once. - Keep clean: wash the arm with soap before dialysis. - Avoid carrying heavy loads or sleeping on that arm. - After needle removal: apply gentle pressure as taught to stop bleeding; if bleeding does not stop, apply firm pressure and call 112 if heavy. - Watch for infection: redness, swelling, heat, pus or pain; fever. - Swelling of the arm or hand, cold or numb fingers, or new pain need urgent review.

Catheter (neck or chest) - Keep the dressing dry and intact; do not swim or bathe in a way that wets it; only trained staff should open it. - Never pull or tug; if bleeding or if the catheter comes out, press firmly over the site and call 112. - Fever, chills, redness or discharge need urgent care, since catheters carry infection risk.

PD catheter (abdomen) - Keep the exit site clean and dry as taught; report redness, pus or pain.

Food and fluids: general principles

A renal dietician gives an individual plan based on blood tests; see nutrition for kidney disease. In general terms:

• Fluids: often restricted in HD, since the body cannot get rid of fluid between sessions; weight gain between dialysis days (interdialytic weight gain) should stay within the limit the unit sets. Count all fluids, including tea, soups, milk, curd, ice, fruit juice, watery fruits and dal. Use small cups, sip, suck ice chips if allowed, rinse the mouth, and avoid salty foods that cause thirst. PD often allows more fluid but needs advice.
• Salt: limit; it causes thirst and fluid retention; see hypertension home care guide.
• Potassium: high potassium can cause dangerous heart rhythms. The dietician may advise limiting certain fruits, vegetables, coconut water, potatoes and tomatoes, or suggest leaching methods (such as soaking and boiling vegetables), depending on results. Never use salt substitutes containing potassium.
• Phosphate: high phosphate harms bones and vessels. The dietician may advise limiting dairy, nuts, pulses and cola drinks; phosphate binder medicines, if prescribed, must be taken with meals as directed.
• Protein: people on dialysis often need more protein than before, since dialysis removes some; the dietician advises; do not restrict protein on your own; frail older adults risk malnutrition; see malnutrition in older adults and how much protein do seniors need.
• Diabetes: continue the sugar plan; see diabetes at home after 60.
• Fasting and festivals: discuss with the unit before fasting, since fluid and potassium risks matter; see fasting, festivals and older adults.
• Avoid herbal and traditional remedies unless approved by the nephrologist.

Medicines and monitoring

• Take medicines exactly as prescribed; a pill organiser and chart help; see pill organiser guide. Some are taken only after dialysis; follow instructions.
• Do not stop or change blood pressure, phosphate binder, anaemia, vitamin D, heart or diabetes medicines on your own.
• Avoid over-the-counter painkillers, herbal products and antacids unless approved; see painkillers and older adults.
• Check blood pressure and weight daily if advised, and record; see how to measure blood pressure at home and weighing scale and weight loss in seniors. Do not measure blood pressure on the fistula arm.
• Keep a diary of symptoms, fluid intake and weights; show the unit.
• Vaccines as advised, including hepatitis B; see vaccines for older adults in India.

Common symptoms and what to do

Cramps or low blood pressure during dialysis: tell staff at once. Itching, tiredness, poor appetite, nausea, restless legs and low mood are common; report them to the unit rather than treating them yourself. Swelling and breathlessness are often fluid and need a same-day call to the unit. See depression in older adults and restless legs and night cramps.

Emergency signs

Call 112 for: severe breathlessness (often from fluid overload) or inability to lie flat; chest pain; fainting or collapse; very slow, irregular or racing heartbeat with weakness (possible high potassium); severe bleeding from the access that does not stop with firm pressure; confusion or drowsiness; a seizure; signs of stroke; or a catheter that is dislodged. Contact the dialysis unit the same day for: loss of the thrill in the fistula; fever or chills; redness, pus or pain at an access site; cloudy PD fluid or abdominal pain; missed dialysis session; weight gain above the limit; swelling; muscle weakness; severe vomiting or diarrhoea; or new symptoms.

Never miss dialysis. If you cannot attend because of illness, weather, strike, floods or transport failure, call the unit immediately to rearrange; missing sessions can be dangerous. Have a back-up plan for transport and an alternative centre, particularly during the monsoon and festivals.

Travel and outings

People on dialysis can travel with planning; talk to the nephrologist first about fitness.

• Short outings: plan around dialysis days, rest after treatment and avoid long exertion on dialysis days. Carry medicine list, fluid-limit reminders, snacks as allowed, water bottle for rinsing, and a card saying "dialysis patient, fistula, no BP on left arm".
• Temples and weddings: plan seating, avoid long fasting and crowds; see mobility aids for temples and weddings.
• Longer trips: arrange dialysis at a unit at the destination well in advance; many centres accept visiting patients with paperwork (recent dialysis records, serology reports, medicine list, referral letter); confirm booking in writing; carry records and extra medicines; avoid extreme heat; plan insurance; see travel with an elderly parent checklist and train, flight and airport assistance.
• Peritoneal dialysis travel: supplies can be shipped; ask the PD team.
• Emergency contacts and a medical summary; see emergency contact card and medical summary.

Choosing comfort-focused care

Some older adults, particularly with advanced frailty, dementia or severe illness, find that dialysis does not extend life or improve quality of life. The nephrologist should discuss the benefits and burdens, and conservative care with symptom control and palliative support is a valid option. A person who is on dialysis may also decide to stop; a palliative approach then focuses on comfort. See palliative care at home guide, end-of-life care at home and advance care planning in India.

Family and carers

Help with transport, meals, medicines and appointments; learn the warning signs and unit numbers; encourage independence; support emotional needs and mood; look after your own health; see caregiver burnout signs and prevention and respite care and taking a break.

When to ask a professional

The dialysis unit team (nephrologist, nurse, dietician, social worker) is the first point of contact. A vascular surgeon looks after fistula problems. A cardiologist or diabetologist manages related conditions. A counsellor can help with coping. For senior services, call Elderline 14567. In an emergency, call 112.