THE POST-TRANSPLANT PROCESS

RECOVERY

Recovery from transplant occurs on many levels. Physically, you will be recovering from the effects of chemotherapy. Psychologically and socially, you will begin to make strides towards returning to a normal routine. During the recovery process, you will be closely monitored to assess your general physical and emotional health and to determine how your disease has responded to the transplant. The recovery process may seem slow, but you need to give your body a chance to recover. The Rocky Mountain Blood and Marrow Transplant Program’s Long Term Follow-Up Program will track your recovery on all levels and will provide resources and support to help you during this process.

The type of transplant you receive (autologous versus allogeneic) influences the length of your recovery and the experiences you have during the recovery process.

AUTOLOGOUS TRANSPLANTS

For those patients who have had an autologous transplant the recovery period is usually faster than for those who have had an allogeneic transplant. The first thirty days following an autologous transplant you will still feel fatigued and will be recovering from the side effects of the transplant. The frequency of your clinic visits will vary depending on specific medical needs. One month after transplant is often when patients start to feel more in control of their lives, although you may still experience side effects from the transplant. Most patients are able to go back to their primary oncologist at this time and only follow up with the BMT team as part of the long term follow up program.

ALLOGENEIC TRANSPLANT

The recovery for patients who have had an allogeneic transplant is longer than the recovery for patients who received an autologous transplant due to the increased number of side effects that these patients may experience. Side effects that can be expected include nausea, vomiting, diarrhea, fatigue, loss of appetite, infections and graft versus host disease. Patients may require admission or readmission to the hospital for management of these side effects. The first thirty days following allogeneic transplant, patients should expect to be seen in the clinic 2-3 times per week. Some patients may need more frequent clinic visits if their condition requires close monitoring. Treatment of side effects that may require frequent clinic visits include graft versus host disease, intravenous fluids if you are not able to take in enough fluids orally, and intravenous antibiotics for active infections. Close monitoring is very important, as transplant patients may become ill very quickly during this period.

From thirty days until approximately the hundredth day after transplant patients are usually seen 2 times a week in the clinic, and possibly more often. This period can be unsettling to both patients and families as there are many unknown and new experiences. After the hundredth day post-transplant, patients may start to feel more like themselves although individual experiences may be very different as the recovery process is very individual. Patients undergoing an allogeneic transplant should expect the recovery period to last at least a year and, depending on the side effects experienced during the transplant, it may last longer.

LONG TERM FOLLOW UP (LTFU):

As you recuperate from your autologous or allogeneic bone marrow transplant, the long term follow up department will be actively involved to facilitate your recovery in the best possible manner. We will become familiar with you early in the transplant process, then become increasingly involved with your care as time goes on. Our goal is to assist you in returning to an optimal level of productivity. Our office will function as a resource for you and your caregiver.


The long term follow up department consists of a multidisciplinary team:

• Your primary transplanting physician: Your physician will continue to see you on a regular basis for clinic visits.



• The long term follow-up transplanting physician: This physician will direct long term follow-up needs and will plan on seeing you at specific time intervals after transplant.



• A nurse practitioner dedicated to long-term follow-up.



• A nurse coordinator dedicated to long-term follow-up.



• A psychologist dedicated to bone marrow transplant.



• A social worker dedicated to bone marrow transplant.



• A nutritionist dedicated to the specific needs of the bone marrow transplant patient.

Other consulting physicians and services will be actively involved in your care as your physician deems necessary. These services include gastroenterology, opthamology, infectious disease, cardiology, pulmonary, dermatology, neurology, dentistry, gynecology, and physical therapy.

How the LTFU program participates in your care:

For autologous transplant patients, someone from the LTFU department will be present during your exit interview from our clinic as you are redirected to the care of your referring oncologist. This visit generally lasts about two hours. During the exit interview, it is a good idea to bring your transplant guide book as well as someone who has been or will be involved in your care--- plan on taking notes during this visit. You will have a complete examination, lab work, discussion about discharge guidelines to follow at home, and you will receive an outline of post-transplant staging studies. All of this information will be sent to your referring oncologist as well. Following the exit interview, we recommend follow-up visits with our clinic at specific intervals that will be determined by your transplant physician.

For allogeneic transplant patients, the LTFU department will see you around D+100, then again at specific time periods following your transplant. You will undergo a complete physical evaluation, lab work, surveillance for post-transplant complications, a nutritional evaluation, and a consult with our psychologist or social worker if needed. Prior to some of these visits, you will be given a screening questionnaire to focus on any physical, emotional, or social concerns. This visit will be separate from a routine clinic visit and will last about two hours. The LTFU department will see you again at 6 months post-transplant and annually as indicated following your transplant. All of the information discussed during these visits will be communicated in writing to you, your primary transplanting physician, and your referring oncologist.

GENERAL OVERVIEW OF LONG TERM COMPLICATIONS:

The LTFU department wants to ensure that you receive support and surveillance for any health problems that may arise following transplant. Additionally, patients may develop secondary health problems related to medications. For these reasons, we have developed specific screening guidelines to monitor for post-transplant complications so that treatment can be started before these complications become a problem.

The LTFU department and your primary transplanting physician will be involved with your referring oncologist in monitoring studies necessary to follow your original malignancy.

Post transplant re-immunizations: These include diphtheria, tetanus, polio, pneumococcal, Haemophilus influenza type B, Hepatitis A and B, and viral influenza. Your physician will inform you when to receive these immunizations. You may also require the measles, mumps and rubella vaccine (MMR) at a later time.

Surveillance for infectious diseases: Blood cultures and chest xrays may be done as surveillance procedures after transplant. Additionally, some patients undergo regular blood tests for cytomegalovirus and hepatitis. During the winter months, surveillance for respiratory viruses is done for upper respiratory complaints.

Evaluation for iron overload: Iron overload can affect vital organs such as the heart, liver, and pancreas. Routine blood work can evaluate for this problem and is done at regular intervals after transplant.

Decreased bone density or osteoporosis can occur after your transplant and needs to be evaluated with an Xray called a DEXA scan. This is especially important for those patients on steroids. Medications can be given to prevent the development and progression of this disorder.

Graft versus Host Disease: This is a potential disorder for allogeneic patients. This disorder can affect multiple systems including the skin, mouth, eyes, gastrointestinal tract, liver, lungs, and muscles. Symptoms include the development of a rash, nausea, diarrhea and stomach cramps, muscle pain, weight loss, dry eyes, oral sensitivity, and shortness of breath. Any of these symptoms should be reported to your transplanting physician.

Endocrine disorders: Some patients may develop thyroid disorders with symptoms such as fatigue, hair thinning and loss of hair, or constipation. Thyroid function tests should be evaluated when these symptoms are present and at yearly intervals. Additionally, patients should be monitored for a reduction in male and female hormones,
and should discuss the risks and benefits of intervention with their transplant physician.

Depression or anxiety: These are common feelings after transplant and will be addressed regularly with the LTFU team.

Routine wellness workups (PAP smears, mammograms, stool for blood, prostate evaluation, eye and dental exams) should be done at regular intervals, per recommendations for the general population. These studies may also be scheduled through your primary care physician. Any patient requiring dental work after transplant should inform the transplant team. Additionally, a frequent complication is the development of cataracts in those patients who have had total body irradiation or those on steroids. Symptoms include blurred vision or worsening vision at night.

In conclusion, the LTFU department is available for all post-transplant concerns, including those that occur years from your transplant date. We want to be a resource for you, your family, and your referring oncologist with our goal being to bring you back to a productive lifestyle.

PSYCHOSOCIAL

Patients
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.

Family Members and Caregivers
There can be a lot of apprehension for family members and caregivers as patients get better. Although they 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 for a few hours 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.

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, sexual difficulties and problems in relationships. 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 compensate for these problems.

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. It is important to remember 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.

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.

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.