After Bone Marrow Transplant: What to Expect When You Return Home

We advise the youngest age should be more than two years — doing a transplant very early, at 6 months to 1 year after only one crisis episode, children cannot tolerate the required immunosuppression properly, though on an emergency basis it is sometimes done for leukaemia. For sickle cell disease and thalassemia, transplant should be offered after 2 years of age. There is no upper age cutoff — every patient has the right to live, whatever the outcome percentage; the decision to go for transplant depends on the patient and family, weighed against quality of life.

Race does not affect the outcome. African sickle cell patients present with more severe sickling compared to Indian sickle cell patients, but the transplant outcome is the same — leukaemia treated in Africa versus leukaemia treated in India has the same outcome. Transplant outcome is mainly affected by patient factors (disease stage and comorbidity), donor factors (full match, half match, or mismatch), and treatment factors (right conditioning, right immunosuppression, right supportive care). Get those right and outcomes across the globe are similar, whether the transplant is done in America, Tokyo, or India.

We encourage good nutrition — patients can eat whatever they like, there is no prohibition, other than avoiding street food. Any hygienic food eaten at home, with good nutrition and a good amount of protein, is good for transplant outcome — the same as for any ordinary healthy human being.

I will circulate full information from my lab on the prerequisites for an HLA sample — what temperature it should be kept at, how many hours it can take to transport, and how many ml of blood sample or a buccal swab is required, so the sample can safely reach India for testing. Laboratory networks such as Metropolis and Lancet already exist in Kenya, Ghana and Uganda, though coverage is patchier in countries such as Nigeria and the DRC.

The stem cell itself has no pathology — it is the mother cell present in every human being that produces blood, the haematopoietic stem cell. Sickle cell disease is a defect in a single gene, a single base-pair defect in the beta-haemoglobin chain, so it is the haematopoietic stem cell that is defective, and we need to replace it with a healthy one. As for effects: about 70% of patients have no major complications and 30% will have graft-versus-host disease. In the acute phase there can be neutropenia leading to sepsis, mucositis (mouth ulceration causing pain, vomiting, diarrhoea), and haemorrhagic cystitis (blood in urine from the conditioning chemotherapy or radiation), which usually recovers with hydration and prevention. Veno-occlusive disease of the liver can also occur. The two most important complications are acute and chronic graft-versus-host disease — chronic GVHD causes dry eyes, dry skin, dry mouth and lung problems, and impairs quality of life. Infertility is another complication, meaning inability to reproduce, not sexual dysfunction — sexual and social life are not affected after transplant, only ovarian or testicular failure affecting spermatogenesis and ovulation.

The first year after the patient returns home. Outcomes depend heavily on staying on medication and staying connected with the transplant team, more than on what happens during the hospital stay itself.

Any fever or serious illness should be treated promptly as a possible sign of infection. Skin rash, diarrhoea, dry eyes, or mouth sores can indicate graft-versus-host disease and should be reported to the transplant centre without delay.

At least once a month for the first year. Good follow-up between the home country doctor and the transplant team can improve outcomes by 20 to 30% compared to patients lost to follow-up.

Vaccinations resume after one year, following a schedule from the transplant team. No household member should receive the live oral polio vaccine while the patient is immunocompromised, since it sheds live virus that can cause paralysis in the patient.