Common challenges

While most patients live longer, sadly not everybody gets the benefits. Patients and families often tell us that they didn’t fully realise how long and difficult the transplant journey would be. When you are waiting (and hoping) for a transplant, you may want to focus more on benefits and less on the negative aspects of a transplant. Realising that transplant is a treatment and not a cure will help you have more realistic expectations. This will also help you make the right decision if you are offered a place on the active list.

Here are some of the things that patients and families find most difficult:

• Waiting for a call, or receiving a call but not getting the transplant, can be difficult mentally and emotionally.
• Being on the active list can be very demanding. You have to attend regular appointments, restrict certain activities and follow a specific routine to stay healthy.
• The recovery process after the surgery is often really tough. You may end up spending a long time in the Intensive Care Unit (ICU). This time can be very stressful for you and your family.
• Some patients need to stay on a breathing machine for longer than others. In some cases, patients need additional supports and may take much longer to breathe on their own than they had hoped.
• You may develop complications and need more treatment. Some patients feel they have swapped one disease for another.
• Rehabilitation can be exhausting. For example, many patients are surprised that they are asked to exercise so soon after their operation.
• Adjusting to life after transplant can feel overwhelming. You will need to take a complex range of medications and attend appointments for the rest of your life.