The recovery process varies tremendously from patient to patient following transplant. Although patients often expect daily improvement after their transplant, it is not unusual for problems to arise in the weeks following discharge, especially for allogeneic patients. It can be very disappointing and discouraging if you do not progress as quickly as you had hoped or if you need to be readmitted to the hospital. Sometimes patients get depressed when they have frequent physical problems or complications following transplant. However, it is important to remember that the transplant process has ups and downs. That is why the transplant doctors will be following you closely as an outpatient for an extended period of time after the transplant. If you are getting discouraged or depressed, please tell the staff or ask to speak with the transplant psychologist. It can help to talk about your expectations and feelings, and to make a plan for how to continue on the road to recovery.
You will experience a number of transitions post transplant. During the transplant, you need a caregiver and a lot of your independence is taken away. As you recover, you will do more and become more independent. The transition to greater independence, while welcome, can also cause stress. You can be uncertain about your abilities, worry about being exposed to germs, or it can be difficult to transition to a normal couple or parental relationship after being in a “patient” role. Going back to work can also be challenging. The transplant team is aware that these transitions are stressful. Please let team members know if you are experiencing difficulties.
Long-Term Psychological Issues after Transplant
Once you are discharged from the direct care of the transplant team and return to the care of your oncologist, you may finally feel that you are making the transition from being a “patient” to being a “survivor.” You may begin to look farther into the future and tentatively make long-term plans or goals. However, there are still emotional issues to be aware of that can arise during the long-term recovery process.
It may take several months for autologous transplant patients and a year or longer for allogeneic transplant patients to return to pre-transplant levels of functioning. Some people say they never quite feel back to “normal.” However, it is important to remember that most long-term survivors feel they have a good quality of life following transplant and they are glad they made the decision to have the transplant. If you have ongoing problems after transplant, such as chronic GVHD, recurrent infections, or limitations in your functioning, it is normal to feel discouraged or depressed. In addition, you may have less support available to you than you had during the immediate post-transplant period because family members have returned to their lives and daily routine. A common fear that arises during the long-term recovery phase is the fear of recurrence of the illness. These thoughts and fears can be very disruptive to your life. If you are experiencing any of these problems, talk with someone on the transplant team.
Other problems that patients describe during the long-term recovery phase include problems in thinking and memory, problems in relationships and sexual difficulties.. Cognitive problems may include reduced attention and concentration, slower reaction time, memory problems and difficulties with problem-solving. If you are having cognitive problems, let your doctor know. Testing can be helpful to identify the types of problems you are experiencing and techniques that may help you to compensate. Tensions in close or intimate relationships are common with any medical illness. The BMT process causes a disruption in family routines with a disproportionate focus on the “ill family member” until they are able to resume some of their former roles. The BMT process is particularly stressful on relationships with intimate partners. The “couple relationship” can be displaced by the demands of the “caretaking relationship.” It is important, once you are resuming other activities in the long-term recovery process, to give time to your intimate relationship as well. As you have probably been told, most patients are sterile after a BMT. This loss of your reproductive capacity can sometimes affect your sense of sexuality, your self-esteem or your intimate relationships. Other sexual difficulties are also common after BMT. Please note that a decrease in sexual interest or sexual activity may be due to a number of factors. For that reason, it is important to talk with your doctor, or a specialist in health-related sexual problems, so you can get some help in figuring out how to address the problem. Sometimes simple interventions work to alleviate the problem.
While the problems listed above are the most common after an allogeneic BMT, other issues can certainly arise. If you are having any difficulties in the long-term recovery process, consult with a physician or staff member on the BMT team.
Family Members and Caregivers
There can be a lot of apprehension for family members and caregivers as patients get better. Although caregivers may be happy to see their family member improving, they may wonder what is safe for patients to be doing, or whether they can provide the care the patient needs. It is important for caregivers to let the staff know of any questions and concerns they may have so staff can address them and help caregivers feel more comfortable.
Sometimes caregivers begin to tire of the long recovery process after transplant. In a sense, they have a 24-hour-per-day, 7-day-per-week job to take care of their family member. The transplant process can sometimes feel like an emotional rollercoaster as things change from week to week. It is important for caregivers to take care of themselves during this time and take breaks, whether they feel they need them or not. If someone is the sole caregiver, perhaps they could get away while the patient is in the clinic for their follow-up appointment, even if it is just to take a walk outside. The weekly Caregiver Group at P/SL for family members and caregivers of transplant patients is also available for support.
Remember, the post transplant phase is a time of transition and change. We expect there are going to be issues or problems that come up, so please keep the transplant staff informed so we can help and support you through this process.