Living with aplastic anaemia and bone marrow failure

Ordinary life, rearranged rather than cancelled

A diagnosis of aplastic anaemia (spelled "anemia" in the US) changes the shape of a day more than most people expect. Meals, appointments, energy, even which friends you see can start to revolve around a set of blood counts you never used to think about. Then treatment adds its own layer, whether that is immune-suppressing medicine, regular transfusions or a transplant.

This page is about the long middle stretch: what living with low blood counts tends to involve, and what tends to help. It covers tiredness and pacing, staying active, infection and bleeding precautions, work, school and travel, vaccines after transplant, eating, and follow-up. If you want the medical basics first, start with what aplastic anaemia is.

What low counts feel like from day to day

Bone marrow failure means the marrow is not making enough of one or more blood cell types. In aplastic anaemia the damage is usually done by the immune system attacking the stem cells in the marrow, and the result is fewer red cells, white cells and platelets, according to the US National Heart, Lung, and Blood Institute. That body lists fatigue, infections that last a long time, and easy bruising or bleeding as the typical symptoms, which map neatly onto the three cell lines.

Counts move. Someone on treatment may feel fine one week and flattened the next, and that unevenness is often harder to live with than a steady low. Your team will tell you which numbers matter most for you right now, and it is worth asking them to explain the figures on your blood test results in plain terms. Our list of questions to ask your haematologist includes a few for exactly this.

Fatigue and pacing

Fatigue in marrow failure is not ordinary tiredness. Rest helps only partly, it can arrive without warning, and it can persist after counts improve. Some of it comes from anaemia, some from treatment, some from disturbed sleep, and some from the strain of simply having a serious illness.

Pacing is the practical response. It means spreading effort across the day and the week instead of spending everything on a good morning and paying for it for three days. Break jobs into chunks. Put the heaviest task at your best time of day. Sit for chores that can be done sitting. Rest before you are exhausted, not after.

Occupational therapists are the specialists in this, and Anthony Nolan notes they can give tips on saving energy and pacing yourself, or supply aids and adaptations. If fatigue is flattening you, ask your team for a referral rather than assuming it is something to push through. A sudden worsening deserves a call too, since it may signal that counts have dropped and a transfusion is due (see blood and platelet transfusions).

Can you exercise with aplastic anaemia?

Often yes, in a modest and adjusted form. Gentle movement protects muscle, mood and sleep, and months of sitting tend to make fatigue worse. The catch is that low counts change what is sensible, and the rules shift as your numbers shift.

Platelets matter for anything with a risk of knocks, falls or strain. Neutrophils matter for where you exercise, because a crowded gym or a public pool brings more exposure to germs than a walk round the block. Low red cells limit how hard you can push before breathlessness or dizziness take over. This is why a blanket answer from a website is never enough.

For transplant recipients, Anthony Nolan gives useful markers. It says light to moderate exercise is normally safe in recovery, defined as raising your breathing rate while still being able to talk, and that more strenuous exercise should wait until your immune system has recovered and your energy has improved. It also advises speaking to your doctor and avoiding exercise if you have very low blood counts, a low platelet count (the page uses 20 as its cut-off), fever, chest pain, dizziness or fainting, among other warning signs. See the Anthony Nolan exercise guide for the full list. The page does not set out the units, so ask your team what platelet level counts as a stop sign for you.

Contact sports and activities with a real chance of a heavy fall or blow, such as rugby, martial arts, climbing or cycling on busy roads, are usually the first things teams ask people to pause while platelets are low. Walking, gentle cycling on a static bike, stretching and seated exercise are the usual starting points.

Deconditioning, physiotherapy and graded rehab

Long treatment, repeated admissions and especially a transplant can strip away muscle and stamina faster than people expect. Anthony Nolan lists stiff joints, achy and weak muscles, reduced bone density and fatigue among the effects of a transplant and its medicines.

Graded rehabilitation is the usual answer. A physiotherapist assesses where you are, then builds up activity in small steps, increasing how often, how long and then how hard, over weeks or months. Anthony Nolan suggests starting with something as small as walking to the end of the garden or marching on the spot, and, for those who are ready, working towards 20 to 30 minutes of moderate activity a day, which can be broken into chunks of 3 to 5 minutes. It also suggests getting up and moving every 30 minutes if you are sitting for long periods.

Many hospitals offer a physiotherapist on the ward, and some run "prehab" programmes before transplant, because being fitter beforehand tends to help recovery afterwards. If nobody has mentioned physiotherapy, ask. Setbacks are normal and do not mean you are doing it wrong. Recovery from marrow failure treatment is rarely a straight line.

Infection precautions and food safety

With a low neutrophil count (neutropenia), the body cannot fight bacteria and fungi well, so even a small infection can become serious fast. The golden rule is simple and worth repeating to everyone in the house: a fever is an emergency until your team says otherwise. Know the number to call, day or night, and what temperature they want you to report.

The everyday measures are familiar ones done more carefully. Wash hands often. Keep cuts clean. Stay away from people who are visibly unwell. Ask visitors with colds to postpone. Avoid handling soil, compost, animal waste or standing water, and let someone else clean the litter tray. Keep up with mouth care, because the mouth is a common way in for infection.

Food safety is the area where advice varies most. Some centres still give a formal "neutropenic diet". Memorial Sloan Kettering says it no longer prescribes that diet and has instead put its nutrition teaching into food safety practice, though its guidance for people with weakened immune systems still advises avoiding raw or undercooked meat, raw fish and shellfish, raw eggs and unpasteurised dairy, and using leftovers within 48 hours (see the MSK neutropenic diet page). It adds that people who have had a stem cell transplant typically need to avoid food from restaurants and similar establishments for 100 days. Policies differ between hospitals and countries, so follow your own team's written guidance if it differs from this.

Bleeding precautions

Low platelets mean cuts bleed longer and bruises appear from little. Soft toothbrushes and gentle flossing, an electric razor in place of a blade, and care with sharp tools are the standard adjustments. Dental care deserves special mention: good oral hygiene lowers infection risk, but dental work can cause bleeding and let bacteria into the blood. Tell your dentist about your diagnosis, and ask your haematology team whether you need a platelet transfusion or antibiotic cover before any procedure.

Some common medicines, including aspirin and some anti-inflammatory painkillers, affect platelet function or clotting. Check with your team or pharmacist before taking anything over the counter, including herbal products. Seek urgent help for a nosebleed that will not stop, any head injury, black or bloody stools, or a sudden severe headache.

Work, school and travel

Can you work with aplastic anaemia? Many people do, though often with changes. Some work through treatment from home. Others take time off, then return part time. The deciding factors are fatigue, infection exposure, how physical the job is and how often you need to be at hospital. Anthony Nolan advises that those at higher risk speak to their employer about temporary arrangements, such as working from home, and it publishes return-to-work guides for employees and employers. In the UK, you can ask for reasonable adjustments, and similar protections exist in many other countries, so it is worth asking HR or a disability advice service what applies to you.

Children with marrow failure often attend school, but the practical details need planning with the school and the clinic: a plan for fevers, rules on infectious illness in the class, activity limits when platelets are low, and flexibility for appointments and fatigue.

Travel needs forethought rather than a blanket ban. Think about where you would be if you spiked a fever, whether the local hospital could do blood counts and transfusions, and whether your records and medicines are easy to carry. Check with your team about vaccines for your destination, because live vaccines are generally unsuitable while the immune system is suppressed or recovering (see immunosuppressive therapy). Buy insurance that covers pre-existing conditions and declare your diagnosis, since policies that do not cover it can fail you exactly when you need them.

Vaccinations after a transplant

A transplant replaces the immune system, so the vaccine protection you built up in childhood and later life is generally lost and has to be rebuilt. For COVID-19, Anthony Nolan says people who were vaccinated before transplant should be re-vaccinated with a full course afterwards. It reports the British Society of Blood and Marrow Transplantation and Cellular Therapy schedule: a first dose three to six months after transplant, a second dose at least three weeks later, then further doses at least three months after that (see the Anthony Nolan COVID-19 page). That schedule may be delayed for someone with graft versus host disease, and your team may adjust the timing for you.

The same page lists people who count as high risk, including those who have had a transplant in the last 12 months. Other routine vaccines follow their own timetable, set by your transplant team, and people close to you are usually encouraged to stay up to date so they do not bring infections home. For the transplant process itself, see our guide to stem cell transplant for aplastic anaemia.

Eating well

There is no special diet that cures marrow failure, and no food that will make your counts rise. The aim is to eat enough, to eat safely, and to keep up strength. Appetite can be poor during treatment, so small frequent meals, energy-dense snacks and fortified drinks are common suggestions from dietitians. Steroids can have the opposite effect and drive appetite up.

Be cautious with supplements. MSK warns against taking supplements, homeopathic remedies or herbal products such as St John's wort without talking to your care team, because they can interact with prescription medicines and may carry microbes. If you receive frequent transfusions, ask about iron intake as well, since iron can build up in the body. This is another reason to run any vitamin or supplement past your haematologist first.

Long-term follow-up

Treatment ending is not the same as the story ending. The NHLBI notes that doctors will monitor your condition and screen for blood conditions regularly. Aplastic anaemia can relapse, and some people later develop related conditions, so regular blood tests continue even when you feel well. After a transplant, clinics also watch for late effects on bone, eyes, fertility, the heart and mood, and for graft versus host disease.

Bring a list of questions to follow-up visits, and keep your own record of treatments, drug names and key results, which is especially useful if you move or change hospitals. The strain of living with a rare, long-term illness also deserves attention, and our page on coping with a rare diagnosis covers emotional health, family and carers. Other kinds of support, such as physiotherapy, dietetics, counselling and welfare advice, often sit just outside the haematology clinic, and your team can usually point you to them.

What to take from all this

Living with marrow failure is mostly a matter of matching your activity to your counts, and of knowing early what needs a call to the team. Fatigue is real and pacing helps. Movement is usually good, within limits set by platelets and neutrophils. Fever means calling immediately. Rebuilding strength after treatment takes time and often goes better with a physiotherapist's help. Most people keep working, studying and travelling in some form, with plans that bend around hospital life.