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Straight answers

Questions people actually ask

Not the questions a brochure would choose. The ones people ask at two in the morning, or in the car park afterwards, or never quite manage to ask at all.

We have tried to answer them honestly, which sometimes means saying that the evidence is weaker than you would like, or that the answer depends on things only your own kidney team knows. Where a number would mislead you on its own, we have given you the catch alongside it.

Starting dialysis

The questions that come in the first frightening week.

When will I actually have to start dialysis?

Later than most people fear, and the decision is driven by how you feel rather than by a number on a blood test. This is the single most important thing to understand about starting.

The IDEAL trial (New England Journal of Medicine, 2010) randomised 828 people with advanced kidney disease to start dialysis early or late. There was no significant difference in survival, and no difference in cardiovascular events, infection, hospitalisation or quality of life. Notably, about three quarters of the "late" group had to start earlier than planned anyway, because they developed symptoms. That tells you the eGFR number alone is a poor trigger.

KDIGO frames the decision as a composite of your symptoms, your signs, your quality of life, your preferences and your results, typically when the eGFR is somewhere between 5 and 10. NICE in the UK advises considering dialysis when symptoms of uraemia start affecting daily living, or at an eGFR of around 5 to 7 if you have no symptoms at all. Both are guidance, not a rule, and they differ, which tells you how much room for judgement there is.

The way to hold it: the blood test is a warning light, not a starting gun. The right time to start is when the illness starts taking more from you than the treatment will. That is a judgement you make together with your kidney team, and preparation should begin at least a year before it is likely to be needed.

Does dialysis hurt?

The honest answer is that the needles can hurt at first, and the treatment itself usually does not.

If you dialyse through a fistula or a graft, two needles go in at the start of each session, one to take blood out and one to return it. They are larger than blood-test needles, and there is no point pretending otherwise. Most units offer local anaesthetic cream or an injection first. The thing almost everybody says afterwards is that it got much easier: the fistula and the skin toughen up, and the staff learn your access. The first few weeks are the worst of it.

If you dialyse through a catheter, there are no needles at all. The lines are connected directly.

During the session itself, most people feel nothing in particular. What can be unpleasant is the fluid coming off: cramps, and the blood pressure dropping, which feels like light-headedness, nausea, yawning, sweating or going flat. Staff manage this constantly, by laying the chair back, slowing the fluid removal and giving fluid if needed.

Afterwards, many people feel washed out, sometimes for hours. Here is the part worth knowing: that is common, but it is not something you have to accept in silence. It usually means the prescription needs adjusting, most often that too much fluid is coming off too fast. Tell your team. It is fixable more often than people realise.

What is the first session really like?

Deliberately short and gentle, and that is a safety measure rather than a sign that anything is wrong.

Your first session is usually run slower and shorter than later ones, with a lower blood flow, a smaller filter and a target of clearing only a fraction of the waste that a normal session would. This is to prevent dialysis disequilibrium syndrome, where the brain reacts badly if waste is cleared from the blood faster than it can leave the brain, causing headache, nausea, restlessness or confusion.

So if someone tells you your first run will be about two hours rather than four, nobody is cutting corners. They are protecting your brain from too rapid a change.

The shape of a session: you are weighed, your blood pressure and temperature are taken, your access is checked, you are connected, and then you sit or lie in a reclining chair. The machine will beep during the session. This is routine, usually a kinked line or a position change, and not a crisis. Bring something warm, because units are cool, and bring something to do.

Do I have to have a fistula?

For most people who will need long-term haemodialysis, a fistula is still the best option: it gives the highest blood flow, it lasts the longest and it gets infected the least.

But "fistula first" has been deliberately softened. The 2019 KDOQI vascular access guideline moved away from a rigid hierarchy towards an individual plan, on the principle of the right access, in the right patient, at the right time. A fistula is the wrong answer for someone whose vessels are poor, or whose life expectancy is short, or who would likely face months of catheter dependence after a fistula failed to mature anyway.

Catheters are the last choice, not no choice. They carry the highest infection risk, and they are also exactly the right answer for someone who needs dialysis this week, or who has run out of other options, or who is on a palliative path.

Fistulas do sometimes fail to mature. That is a known and reasonably common outcome, not a personal failure, and it is why a contingency plan is made from the beginning.

Your life

Work, food, travel, intimacy, mood. The parts nobody puts in the leaflet.

Can I keep working?

Many people do, and the numbers are sobering, and both of those things are true at once.

In US registry data, employment among people starting dialysis was 9.9% for those on in-centre haemodialysis, 21% for home haemodialysis and 25% for peritoneal dialysis (USRDS Annual Data Report, 2022). Around 38% of people who had been working six months before their kidneys failed had stopped by the time dialysis began.

That gap between in-centre and home therapies looks dramatic, and it must be read carefully. It does not prove that home dialysis keeps people in work. Younger, fitter, more independent people are more likely to be chosen for home therapies in the first place, so the groups are not comparable. What is fair to say is that the direction makes sense, because home therapies give you control over the timetable, and three fixed half-days a week at a unit is very hard to build a job around.

The practical levers are worth knowing early: ask about home dialysis, ask about nocturnal or twilight slots at the unit, ask your employer about flexible hours and reasonable adjustments, and get the renal social worker involved before the job is at risk rather than after. Employment protections for people with kidney failure exist in many countries but they differ, so ask locally rather than assuming.

Can I still eat the things I like?

More than you have probably been told, and the modern guidance has moved a long way from the photocopied list of forbidden foods.

There is no single kidney diet. The right diet depends on your treatment, your remaining kidney function, your blood results and your other conditions. The 2020 KDOQI nutrition guideline explicitly moved potassium and phosphorus advice towards individualisation rather than blanket restriction, because blanket restriction causes malnutrition and misery, and the evidence for it was weaker than patients were led to believe.

Some things that surprise people. Protein goes up on dialysis, not down: before dialysis it is often restricted, and once you start it needs to roughly double, because dialysis removes amino acids. Carrying the old low-protein rules into dialysis is a well-known way to become malnourished, and malnutrition harms more people on dialysis than the occasional high-potassium meal does. On peritoneal dialysis, potassium is often run low, and some people are told to eat more potassium-rich food, not less.

For phosphate, the highest-yield change is usually not cutting lentils: it is cutting processed food. Phosphate added to food as a preservative is almost completely absorbed, while the phosphate naturally present in beans, nuts and grains largely is not. Read labels for ingredients containing "PHOS". And never solve a phosphate problem by eating less protein: that is what the binders are for.

For fluid, the real lever is salt. Salt makes you thirsty, thirst makes you drink, and drinking is what forces the machine to pull fluid off hard and fast. Eating less salt is more effective than trying harder not to drink. Be careful with salt substitutes, because most of them are potassium chloride.

Ask for a renal dietitian specifically, not a general one, and take your real food diary and your actual blood results. If you are in Seychelles or visiting, the local food matters: coconut, breadfruit and cassava are high in potassium and appear on no temperate-country diet sheet, while papaya, mango and pineapple are all lower in potassium than banana.

Can I travel?

Yes. It takes planning, and the planning is heavier than people expect, but dialysis does not end travel.

Haemodialysis away from your usual unit is a real and established thing. The key is that it is not a booking, it is a clinical handover between your unit and theirs, which is why the paperwork is substantial and the lead times are long. Allow at least three months for international travel, and treat six weeks as the absolute floor.

Peritoneal dialysis is generally the easiest modality to travel with, because fluid can often be delivered to your destination, although the notice periods for international shipping can actually be longer than for booking a haemodialysis chair.

There is one thing almost nobody tells travelling patients, and it can cost you dearly: ask the host unit to confirm in writing that it runs virus surveillance and separates patients who are positive for blood-borne viruses. If your home unit cannot get that confirmation, it may treat you as positive when you return, which means segregated dialysis and suspension from the transplant list for six months.

We have written the whole thing up properly, including a checklist you can tick off and a message you can copy and send to a unit.

Will dialysis affect sex and relationships?

Very often, yes, and it is the most under-discussed subject in kidney care. It is worth raising, because a lot of what causes it is treatable.

Erectile dysfunction is the norm rather than the exception: a meta-analysis found a prevalence of 71% in men with kidney failure, and 79% among men on haemodialysis specifically (International Journal of Impotence Research, 2020). Most of those men are not being treated for it. Sexual difficulties in women are also common but much less studied, and the reported figures vary so widely between studies that we will not put a single number on it.

The causes are usually several at once, and many of them can be addressed: anaemia, medication side effects (some blood pressure medicines in particular), hormonal changes, depression and anxiety, sheer exhaustion, vascular disease, diabetes, and how you feel about your own body when it has a tube or a fistula in it.

Treatments for erectile dysfunction do exist and are used in people on dialysis. They interact with some heart medicines, so they must be prescribed by your team and never bought online. Please raise it. Nobody in the unit will be surprised or embarrassed.

On fertility: it is reduced in kidney failure but it is not zero, so contraception is still necessary if a pregnancy is not wanted. Pregnancy on dialysis is possible, is high-risk, and needs joint specialist obstetric and kidney care. Fertility often improves after a successful transplant, which catches people out.

Is it normal to feel this low?

Yes, and it is common, and it is treatable, and it is worth telling someone today.

On formal interview assessment, depression affects about 23% of people on dialysis (Palmer et al., Kidney International, 2013). On questionnaires it looks much higher, around 39%, and that gap is worth understanding rather than glossing over: the physical symptoms of kidney failure, meaning fatigue, poor sleep, poor appetite and poor concentration, are exactly the same items that depression questionnaires score. So a high score is a reason to be properly assessed, not a diagnosis in itself.

Grief for the life you had before, anxiety, and a sense of losing your identity, especially around work and independence, are normal responses to a hard thing. They are not weakness.

What helps: treating the physical drivers (anaemia, poor sleep, restless legs, itching, inadequate dialysis), renal counsellors and psychologists, who are part of the standard kidney team in many systems, peer support from other patients, and, where it is needed, formal treatment. Depression is also linked to missing dialysis sessions, which is a dangerous loop to be caught in, and it is one more reason to say something early.

If you are having thoughts of harming yourself, please tell someone now: your unit, your doctor, someone you trust, or your local crisis line.

What happens if I miss a session?

Missing dialysis is dangerous, not merely inconvenient, and this is one place where we are not going to be gentle with you.

In a European cohort study, in the 48 to 72 hours between a missed session and the next scheduled one, the death rate rose from 4.86 to 51.9 per 100 patient-years, and hospitalisation rose from 0.58 to 2.1 per year, compared with normal attendance (BMC Nephrology, 2020). Missing the first session of the week, the one after the long weekend gap, was roughly twice as dangerous as missing a mid-week session.

If you cannot make a session, ring the unit. Never simply skip it. They will rearrange, and they would far rather move you than admit you.

And if you keep wanting to miss sessions, that is worth talking about honestly with your team, because it usually means something is wrong that can be fixed: the treatment is making you feel awful, or you are depressed, or the timetable is destroying your life. All three of those have answers.

The bigger questions

Prognosis, transplant, and the question people are most afraid to ask out loud. We answer all three honestly.

How long will I live?

No website can answer this for you, and you should be suspicious of any that tries. Your age, your heart, your other conditions and how well you are otherwise matter enormously, and your own kidney team can give you a far better picture than any statistic here. But you asked an honest question, so here is what is actually known.

People do live for many years on dialysis. The word "end-stage" is bleak and misleading, which is why many patients and clinicians now prefer to say "kidney failure".

The clearest evidence comes from comparing dialysis with conservative care, which is active treatment of symptoms without dialysis. A systematic review of 22 studies covering 21,344 patients found the adjusted hazard ratio for death, dialysis compared with conservative care, was 0.47 (95% CI 0.39 to 0.57). Median survival ran from 20 to 67 months on dialysis, against 6 to 31 months on conservative care (Nephrology Dialysis Transplantation, 2022).

Those numbers must never be quoted bare, and the study authors said so themselves. The comparison is badly confounded: people who chose conservative care were a median of seven years older, sicker, and less independent to begin with. The authors concluded that a high risk of bias and heterogeneous reporting "preclude definitive conclusions", and that the results "cannot be translated to an individual level". In people aged 80 or over, the survival advantage of dialysis persisted but was substantially reduced, and most individual studies showed no significant difference at all. On quality of life, a companion review found no clear advantage for either choice.

The honest summary. For a younger, fitter person, dialysis very probably buys meaningful extra years. For someone who is very old, frail or heavily burdened by other illness, dialysis may buy little or no extra time, and it will certainly cost time: hospital visits, procedures, and hours spent recovering from each session. Some people in that position live longer on dialysis. Some live about as long, but spend more of it in a hospital chair.

That trade-off is yours to make, not a decision for the clinicians alone, and it can be revisited. It is not something you decide once and are then locked into forever.

Will I need a transplant, and will I be able to get one?

A transplant is the best treatment for kidney failure for those who are suitable for it. It is a treatment, not a cure: it exchanges one set of problems (dialysis, fluid limits, diet, time) for another (lifelong anti-rejection medicines, infection and cancer risk, and the fact that transplants do not last forever).

The survival case is strong but it has a shape people are rarely shown. In the landmark registry study (Wolfe et al., New England Journal of Medicine, 1999), the risk of dying in the first two weeks after a transplant was 2.8 times that of staying on the waiting list. After that the risk falls below dialysis, and long-term mortality was 48% to 82% lower than for comparable patients still waiting. So transplantation is a bet that pays off, but the payment comes first, and the break-even point is measured in months.

Whether you are suitable is decided by a transplant centre after a full assessment, never by a website. Broadly they are asking whether you would survive the surgery and the immunosuppression, whether there is an active cancer or untreated infection to deal with first, and whether anything would destroy the new kidney immediately. Fitness matters far more than age: many programmes transplant people in their seventies.

The most important practical point is timing. A transplant done before dialysis is ever needed gives the best outcomes, and it needs early referral, because the work-up takes months and finding a living donor takes longer. Ask the question "should I be referred for a transplant assessment?" in clinic long before dialysis is on the table.

One piece of regional honesty. No kidney transplant programme in Seychelles is documented in any source we could find, and no overseas referral pathway is documented either. That does not mean none exists, but it does mean we will not pretend to know. Across the Indian Ocean, domestic transplantation is largely absent: Mauritius states plainly that it has no transplant service, and the Maldives sends patients to India or Sri Lanka. Ask your team directly what the pathway is where you are.

What if I do not want dialysis, or I want to stop?

This is a legitimate question. Asking it does not mean you are giving up, and it does not mean anything is wrong with you. Please read this whole answer, and then please talk to a person.

First, the thing most people do not know: choosing not to dialyse is not choosing nothing. It has a name, conservative care, sometimes called supportive care, and it is an active treatment. It means treating the anaemia, the fluid, the itching, the nausea, the breathlessness and the pain; controlling blood pressure; reviewing and often reducing your medicines; dietetic support; planning ahead for what you want; and psychological, spiritual and carer support, with palliative care alongside when it helps. It is everything except dialysis. NICE guidance requires that it be offered as a genuine choice to everyone who might need dialysis, and NIDDK is explicit: you have the right to decide how your kidney failure is treated.

For someone who is very old, very frail, or already carrying a great deal of illness, dialysis may add little time, and it will certainly take time. Choosing conservative care in that situation is a considered decision about how you want to spend the time you have. It deserves respect, not persuasion.

Second, if you are already on dialysis and you want to stop, that decision is also yours, and it should be made with your team, your family and palliative care beside you, never alone and never in the middle of a crisis. But before any decision, please make sure it is being made for the real reason.

Because there are reasons people want to stop that are fixable, and they are missed all the time. If you feel wrecked after every session, that is usually a sign that the prescription needs adjusting, most often that too much fluid is coming off too fast, and it can very often be improved. If you are depressed, that affects roughly a quarter of people on dialysis, it is treatable, and it makes everything look permanently hopeless while you are inside it. If the timetable has taken your whole life, there may be another modality, or another schedule, that gives some of it back. None of those is a reason to end your life. They are reasons to change your treatment.

So: say it out loud, to your kidney team, today. Tell them you have been thinking about stopping. They will not be angry with you and they will not abandon you. If, after everything has been tried and everything has been said, you still choose to stop, then your team should support you through it with proper symptom control and palliative care. That is part of good kidney medicine, not a failure of it.

And if what you are really feeling is that you do not want to be alive, that is different, and it is urgent. Tell someone right now: your unit, your doctor, someone who loves you, or your local crisis line. Please do not sit with that on your own.

In Seychelles

What is documented, what is not, and what to do about the gap.

Is dialysis available in Seychelles?

Yes, haemodialysis is provided. AMSA Healthcare has managed haemodialysis services in Seychelles since 2015 and describes units at Seychelles Hospital in Mont Fleuri on Mahe, which is sometimes referred to as Victoria Hospital, and at Baie Ste Anne Hospital on Praslin. The 2023 national survey by the Ministry of Health reported 230 people on haemodialysis in the country.

Two important gaps. Peritoneal dialysis is not documented as available in Seychelles: we found no evidence of a programme, and no evidence against one either, so do not assume it. And no kidney transplant programme is documented.

Details, capacity and contact numbers change without notice, so confirm anything you plan to rely on directly with the renal unit.

Can I come to Seychelles on holiday and dialyse here?

We do not know, and we are not going to guess. That is the honest answer, and it is more useful than an invented one.

There is no publicly available, authoritative statement of whether the Seychelles renal unit accepts visiting patients, on what terms, at what price, with what lead time, or with what spare capacity. Any specific figure you find on a third-party travel website for Seychelles is uncorroborated, and you should treat it with suspicion. We will not repeat it here.

What we can give you is everything that does not depend on those unknowns: how holiday dialysis works, how far ahead to start, exactly what your home unit must send, the virus surveillance question that can cost you six months on the transplant list, an interactive checklist, and a message you can copy and send straight to a unit.

What we cannot do is book it. Dialysis.sc is an information resource. It does not book, provide or guarantee dialysis, and every arrangement has to be confirmed directly with the treating unit and with your own kidney team.

Where to go next

When to seek urgent help

Some things cannot wait until your next session. If you recognise yourself here, act now.

Call your local emergency number now

  • Bleeding from your fistula, graft or catheter that will not stop with firm, continuous pressure

    Blood loss from a dialysis access can be rapid and life-threatening. Press hard, do not let go, and call for help.

  • Chest pain or tightness, or pain spreading to the arm or jaw

    This can be a heart attack. Heart disease is the leading cause of death in people on dialysis.

  • Severe breathlessness, especially lying flat, waking up gasping, or coughing pink frothy sputum

    Fluid on the lungs. This can be fatal and may need urgent dialysis.

  • Collapse, fainting, a seizure, or new confusion

    Could be a dangerous drop in blood pressure, a dangerous potassium level, a stroke, or dialysis disequilibrium.

  • Palpitations with dizziness, or a very slow or very irregular pulse, especially after a missed session

    Suggests a high potassium level or an abnormal heart rhythm. Severe hyperkalaemia can stop the heart.

  • Sudden weakness or numbness of the face, arm or leg on one side, or sudden trouble speaking or seeing

    This can be a stroke. People on dialysis are at high risk, and treatment is time-critical.

Contact your dialysis unit today

  • The thrill (the buzz you can feel over your fistula or graft) is weak or gone

    The access may be clotting. This is time-critical and it may still be saved if it is treated within hours.

  • Fever, shaking chills, or suddenly feeling very unwell, especially if you have a catheter

    This can be a bloodstream infection. Catheters carry the highest infection risk of any access.

  • Cloudy drained fluid, tummy pain, fever, nausea or vomiting on peritoneal dialysis

    Treat this as peritonitis until proven otherwise. Do not wait, and bring the drained bag with you.

  • Redness, heat, swelling, tenderness, pus or discharge at any access or exit site

    An access or exit-site infection needs to be seen, not watched.

There are more warning signs than these, covering your access, your fluid and your mood. See the full list on the patient hub.

This list is general information, not a diagnosis. It cannot cover everything, and it does not replace your kidney team. If something feels wrong and it is not on this list, ring the unit anyway.

Sources

  1. IDEAL trial: a randomized, controlled trial of early versus late initiation of dialysis (Cooper BA et al., New England Journal of Medicine, 2010)
  2. Comparison of mortality in all patients on dialysis, patients on dialysis awaiting transplantation, and recipients of a first cadaveric transplant (Wolfe RA et al., New England Journal of Medicine, 1999)
  3. Survival of patients who opt for dialysis versus conservative care: a systematic review and meta-analysis (Nephrology Dialysis Transplantation, 2022)
  4. Prevalence of depression in chronic kidney disease: systematic review and meta-analysis (Palmer S et al., Kidney International, 2013)
  5. Prevalence of erectile dysfunction in patients with chronic kidney disease: a meta-analysis (International Journal of Impotence Research, 2020)
  6. Hospitalization and mortality following non-attendance for haemodialysis (BMC Nephrology, 2020)
  7. Clinical Practice Guideline for Nutrition in CKD: 2020 Update (KDOQI, American Journal of Kidney Diseases, 2020)
  8. Clinical Practice Guideline for Vascular Access: 2019 Update (KDOQI, American Journal of Kidney Diseases, 2019)
  9. NG107: Renal replacement therapy and conservative management (NICE, 2018)
  10. Annual Data Report 2022 (employment and home dialysis) (United States Renal Data System (USRDS), 2022)
  11. Kidney Failure: Choosing a Treatment, and Conservative Management (National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK))
  12. National Survey of Noncommunicable Diseases in Seychelles 2023 (Seychelles Heart Study V) (Ministry of Health, Seychelles, 2024)