On return from your operation you may be in a deep sleep and be supported by machinery e.g.. ventilator, feeding tube, intravenous infusions, heart and blood pressure monitors, chest drains, catheters etc. You are likely to wake up in intensive care and require one to one nursing care until you are well enough to be transferred to a surgical ward for recovery. You will be under the care and supervision of your transplant team as well as the regular ward staff.
You will be continually assessed for pain control and any sedation will be reduced. The heavy pain control and sedation can also cause hallucinations for some patients, which can be distressing, but it reduces in time and nursing staff will support you.
Physiotherapy plays a vital role in recovery from the onset and you will be encouraged to sit out of bed and walk around as soon as possible. As you recover you will be encouraged to walk the length of the corridors and climb stairs so that you can resume an independent lifestyle once more. Physiotherapy and exercise should be an ongoing thing once you are discharged and your physiotherapist may refer you to local services for more rehabilitation e.g. cardiac or pulmonary rehabilitation classes.
A dietician may visit you to help with your specific dietary requirements e.g. it may be difficult to eat and swallow if you've been on a ventilator or you may have lost too much weight during your illness and transplant.
The transplant nurses will visit regularly to teach you about your new medications, this will vary from patient to patient, but will include immunosuppression drugs. It's important to understand the drugs and to be able to follow your new drug regime independently before you are discharged. The new drugs may feel overwhelming at first and a lot to understand after major surgery and while you're recovering in hospital. Patients are supported by the nursing staff and transplant team and are also usually given a transplant diary to record their daily drug doses, observations on temperature and weight and make notes which are helpful. It's useful to have a family member with you for the drug training sessions, as it's a regime for life and will continue at home.
Your family and friends are encouraged to support you during your hospital stay and your transplant coordinator will direct them to the family waiting rooms and keep them updated with your progress. Your transplant coordinator will be able to give advice on accommodation in the event of relatives needing to stay nearby the hospital while you recover. It is wise to try and prepare for this and for the the possibility of a long stay, which can happen for some patients. In case of need, your transplant coordinator will be able to put you in touch with other hospital services e.g.chaplaincy, social workers, palliative care etc. There will also be a Patient Advice and Liaison Service (PALS) available in the hospital which offers confidential advice, support and information. They can support families in many ways e.g helping to resolve concerns and problems, help with complaints, help with putting you in contact with support groups.
Once your doctors think you are fit enough and you are competent with your drug regime you will be discharged. This may feel very daunting as well as exciting, as you will have been used to having medical staff on call to help you. You may be allowed home for a visit prior to discharge or be able to stay in hospital accommodation nearby the hospital to gain confidence about going home. You will be given phone numbers for your transplant team should you need help.
You will then start visiting the post transplant clinic regularly so that the team can closely monitor your progress. Initially these may be every week then they may progress to fortnightly, monthly and be less frequent as time goes on. Clinic visits will depend on how well you are doing and if you encounter any problems. At clinic you will have relevant tests for your transplant type and they may include x-rays, biopsies, ecgs, lung function tests etc. A range of blood tests will be taken to monitor for rejection and infection and side effects of drugs. It is quite usual for drugs to be adjusted from time to time and new drugs introduced to help keep you stable and in optimum health.
The care and clinic visits will be ongoing and become part of your new life and you will be to contact your transplant team for advice, should you experience problems or have worries in between clinic visits.