Living well on dialysis: work, exercise, relationships, mood

Work

The numbers are stark, and they are worth seeing before you make a decision you cannot undo. In US registry data, employment among people starting dialysis was 9.9% on in-centre haemodialysis, 21% on home haemodialysis and 25% on peritoneal dialysis. Around 38% of people who had been employed six months before kidney failure had stopped working by the time dialysis began.

The levers that actually exist, and most people never hear about them:

• Ask about home dialysis and about evening, twilight or overnight in-centre slots. A treatment that happens while you sleep does not compete with your working day.
• Ask the employer for adjustments before there is a crisis: flexible hours, reduced hours, remote working. In many countries kidney failure is a recognised disability with legal protections, but the specifics differ by jurisdiction and we are not going to state a legal position that may not apply where you are. Ask locally.
• Involve the renal social worker early, while you still have the job, rather than afterwards. This is the single most common regret we could name.

Exercise

The guidance is the same as for everyone else, adjusted for what you can tolerate: KDIGO suggests at least 150 minutes a week of moderate physical activity (or 75 minutes of vigorous, or a mixture), plus muscle-strengthening on two or more days a week.

There is also something specific to dialysis that deserves to be much better known. Intradialytic exercise, usually pedalling on a small device during the first couple of hours of a session, for 30 to 45 minutes, three times a week, is described as safe with no contraindications, and has been shown to improve the adequacy of dialysis, your tolerance of fluid removal, and your physical function. If your unit has the pedals, use them. If it does not, ask why.

Now the realistic framing, because a 150-minute target is a cruel thing to read if you cannot climb your own stairs. Most people on dialysis are starting from a very low base. "Exercise" can legitimately mean walking to the end of the road and back, or standing up from a chair ten times without using your hands. The direction of travel matters far more than the intensity. Protect the fistula arm from direct injury, and otherwise do not treat it as a reason to sit still.

Sex and relationships

This is the most under-discussed subject in kidney medicine, and the silence is doing real harm, so we are going to be direct about it.

Erectile dysfunction is the norm, not the exception. A meta-analysis found a prevalence of 71% in men with end-stage kidney disease, and 79% among men on haemodialysis specifically. A multinational study found that most men on haemodialysis have erectile dysfunction and are not treated for it. Not because it is untreatable. Because nobody asks, and nobody tells.

Sexual difficulties in women on dialysis are less studied and also common. The reported prevalences vary widely depending on how the question is asked, so we will not give you a single figure and pretend it is solid. What is clear is that it is common, and that it is even more poorly researched than in men, which is its own indictment.

The causes are multiple, and many are treatable: anaemia, side effects of medicines (particularly some blood pressure tablets), hormonal changes, depression and anxiety, fatigue, vascular disease, diabetes, body image (a catheter, a fistula, a tube in your abdomen), and plain exhaustion.

What to do: raise it. It is common, it is not your fault, and there are treatments. Medical treatments for erectile dysfunction exist and are used in people on dialysis, but they interact with some heart medicines, so they must be prescribed by your team rather than bought online. We do not publish drugs or doses here, and anyone who does, without knowing your heart medicines, is putting you at risk.

Fertility and contraception

Fertility is reduced in kidney failure. It is not zero, and this catches people out. Contraception is still necessary if a pregnancy is not wanted. Pregnancy on dialysis is possible, is high-risk, and needs specialist joint obstetric and kidney care from the start. Fertility often improves after a successful transplant, which surprises people and matters a great deal clinically.

The person next to you

The partner of someone on home dialysis is frequently also the technician. That is a real burden and it is under-acknowledged. Carer support and respite exist in most systems, and asking for them is not a failure of love. Relationships change under this, and the change is easier to survive if it is spoken about rather than absorbed in silence by both people separately.

Mental health

Depression is common and under-recognised. The best evidence, a systematic review by Palmer and colleagues, found that 22.8% of people on dialysis had depression when assessed by formal clinical interview, while 39.3% screened positive for depressive symptoms on rating scales.

Depression on dialysis is associated with more missed treatments, and missed treatments are dangerous. That loop is the reason low mood on dialysis is not a soft issue, and why it belongs on the red-flag list alongside chest pain.

Anxiety, grief for the life you had before, and a lost sense of identity, particularly around work and independence, are normal responses to a hard situation. They are not weakness, and they are not ingratitude.

What helps: renal counsellors and psychologists, who are part of the standard kidney team in many systems and are chronically under-used; peer support and patient associations; treating the physical drivers (anaemia, poor sleep, restless legs, itching, inadequate dialysis); and, where it is indicated, formal treatment. Antidepressant choice in kidney failure is specialist territory, so no drug advice appears here.

Sleep, itching and restless legs

These three destroy quality of life quietly, and they are badly under-treated, largely because people assume they are simply the price of dialysis and never mention them.

They are not the price. Uraemic itch has treatments, including newer ones. Restless legs has treatments, and is sometimes driven by iron deficiency, which is correctable. Poor sleep often has a cause that can be found. The message is short: tell your team. These are not things you have to live with.

Travel

Dialysis does not end travel. It ends spontaneous travel, which is a real loss, and it replaces it with travel that has to be planned.

• Haemodialysis away from base means booking sessions at a unit where you are going. Tell your kidney team as early as you can. Kidney Care UK advises at least four weeks ahead for travel in general, and considerably longer for international travel.
• Peritoneal dialysis is the easiest to travel with, because fluid can often be delivered to your destination and the overnight machine is transportable. It still needs lead time, because freight and customs are involved.
• Travel insurance must declare kidney failure and dialysis. Undeclared, a policy is void, which is the most expensive small print in the world.
• Always carrya summary of your kidney history and medicines, your unit's contact details, and enough medication in your hand luggage for the whole trip plus a delay.
• Be honest with yourself about the risk. Dialysing away from your usual unit does carry some added risk: unfamiliar staff, unfamiliar equipment, and variation in standards between countries. Plan properly, and do not be frightened off.

If you are travelling to Seychelles, or living here and planning a trip, there is a great deal more to say, including one question about virus surveillance that can cost you six months on the transplant list if you fail to ask it. Read the visitor dialysis planner.

The honest summary

Dialysis takes time, energy and spontaneity, and it asks you to manage a chronic illness as a part-time job on top of whatever else your life contains. Anyone who tells you it is fine is not paying attention.

And: people work, travel, have relationships, raise children, swim, garden, argue about football, and live for decades on this treatment. The difference between the people who do and the people who do not is very rarely willpower. It is usually information, planning, and a team that was asked the right questions early enough.

Which is the entire reason this site exists. If you have got this far, you are already doing the thing that helps most.