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Survivors' Guide for Bone Marrow/Stem Cell Transplant
What to Expect and How to Get Through It

Recovery

The transition from the hospital to the outpatient setting was not difficult at all, probably because I was in pretty good shape compared to the shape that some other patients were in.

It is hard when you return home because everyone is ready for you to be okay again and they don’t understand that your recovery is just beginning and it is a difficult journey. It is chronic and people get tired hearing about chronic.

In my mind I thought of the transplant like climbing a mountain and I was prepared emotionally for the hard climb. I was not prepared, however, for the fact that the climb down, after the transplant, would be just as hard, if not harder, than the climb up had been.

Physical Changes Post-Transplant
There is considerable variation among bone marrow/stem cell transplant survivors in physical, psychological and social functioning post-transplant. Some patients recover fully, returning to their old activity level several months after the transplant. For others, the recovery period is slow, and they never return to old levels of vigor and health. For those who continue to suffer chronic health problems, it is sometimes hard to accept the physical changes post-transplant without mourning the loss of the vigor and strength prior to the treatment. The extent of difficulty during the recovery process is often closely tied to the degree of physical difficulties post-transplant. Having repeated infections or chronic graft versus host disease can contribute to stresses and difficulties in returning to normal activities. Some of the potential problems that survivors may experience include fatigue, decreased strength, muscle cramps, difficulty concentrating, memory problems, sleep disturbances, numbness in hands and feet, cataracts, skin and joint problems, dry eyes or mouth, frequent infections and kidney or other body-organ dysfunction. Keep in mind when reading this list that not everyone will experience these problems. Generally these problems resolve themselves with time and most people return to productive and fulfilling lives post-transplant.

Some of the physical and mental changes post-transplant may also occur as a side effect of some of the drugs. Many of the drugs taken post-transplant can affect organ function, immune function, physical appearance and psychological well-being. Knowing that many of the changes are temporary can be helpful for everyone involved.

Dealing with a changed physical appearance due to bloatedness, excessive hair growth, or skin changes post-transplant can be traumatic for some people. It has been very disconcerting to encounter old friends who find it difficult to recognize me because of changes in the color and texture of my hair and changes in the shape of my face.

I still have my “prednisone chub” in my cheeks and a little bit of facial hair from the cyclosporine a year post-transplant. It makes me realize how much I took my health and general appearance for granted before the transplant. I used to feel that my mind and body were one ... very much in tune, but now it feels as if my body is a stranger to me. We’re getting re-acquainted but it’s strange to get an ache or pain and be afraid of what it could mean. Sometimes I am not sure what my body needs and that feels very foreign.

If you are having difficulty coping with a changed body image, programs such as the Look Good ... Feel Better Program at the American Cancer Society may be able to offer some helpful suggestions. See Resource Listing for details.

Emotional Adjustment Post-Transplant
Going through a bone marrow/stem cell transplant changes us in many ways, requiring us to re-evaluate many aspects of our lives. Give yourself time to deal with the emotional impact of the transplant. Often people expect you to be over the experience in a month or two. In reality, however, the process may take much longer. Recovering from the transplant entails not only a physical process but requires also a mental shift from seeing yourself as sick to seeing yourself as healthy.

Some people experience recurring memories of the transplant which conjure up feelings of vulnerability, anxiety, or depression. You may find yourself going over the decisions you made, questioning the reasons for the transplant, and reliving the difficult times you had. Fear of relapse or complications are also not uncommon:

Once I got through the transplant and into the recovery stage, getting back to living was difficult. Physically I had limitations but also emotionally I felt very different. I experienced a feeling of loneliness and sadness. I guess one could label it a sort of depression. Even as I write this 10 months posttransplant, I still experience such overwhelming feelings. My therapist said that many times people going through such an intense trauma experience a sort of “aftershock” when they finally allow themselves to feel all the emotions they didn’t allow themselves to experience during the actual event.

If these fears cause a major disruption in your life or cause sleep disturbances, consider seeking some kind of outside help. Often speaking to a professional therapist or to members of a support group can help you put the experience in perspective and move on. Keeping in touch with someone who did the transplant with you can be particularly helpful.

Calling friends who did the transplant with me, comparing notes on how we were doing and just complaining together and knowing what the other person was going through helped me cope.

The transplant may also have a strong positive impact on one’s emotional wellbeing. Many people find that they emerge from the experience strengthened and more resilient: “I was changed by this, dramatically changed. It is a life-changing experience. It’s hard to believe that you will grow from this and that the change could be positive, but it is.” (from the nbmtLink video, The New Normal: Life After Bone Marrow/Stem Cell Transplant)

I feel that I am now (five years later) able to face any health crisis that may confront me in the future. I didn’t have that confidence before. I can relax and enjoy the good things in life more now and don’t take them for granted. I have more faith in God that he will see me through the hard times and that I need not fear the future.

Changes In Self-Esteem
Making it through the transplant is a heroic accomplishment. However, many of us, upon emerging from the hospital, tend to compare our performance to our previous levels of activity or to the activity levels of our friends and colleagues. Our inability to accomplish as much as before or to be self-supporting may dash our self-esteem. As you begin the recovery process, set realistic goals for yourself and adapt your activities to your energy level instead of berating yourself for not being able to do more. Respect your need for rest and relaxation. One patient writes:

I had to realize my energy was not going to be the same as before so I read, did crafts, talked on the phone, rented videos and learned to do other things that weren’t so physical. Also rides in the car and going to the park was wonderful.

Changes in Family Ties And Relationships
The transplant experience can also often result in changed relationships among family members. A working parent, for example, might take on virtually all of the household chores and child caring tasks during the transplant. Often these changes bring families closer, but, in some cases, the changes in roles increase tension and lead to additional strains. Here are the accounts of some patients: I feel our whole family is on a more intimate level with each other because of all of the demands of my illness.

For the most part the transplant brought my family closer together, but at times I felt overprotected and at other times (even though so many people were around) I felt incredibly isolated.

The transplant experience has impacted negatively on the relationship between my son and me. We were very close, and in order to protect himself in case I died during the transplant, my son had to put some distance between us. It has been five years and we don’t seem to be able to lessen the distance any, which makes me sad.

Friendships may also change or take on new meaning as you reflect on the people who were supportive of you during the transplant and those who were not. Some friendships will be enhanced and enriched whereas others may dissolve under the pressures of the transplant.

Some transplant patients have felt that the experience of having a lifethreatening disease and undergoing the transplant has set them apart from their peers:

On an emotional level--I felt different from other people. I sometimes still find it difficult to talk to other people. I am most at home with cancer survivors and BMT survivors.

Changing Roles
Once out of the hospital, some patients find it difficult to perform many of the tasks they did before transplant. In the months following the transplant, both family members and the patient have to readjust to the new role and new capacities of the patient: I had difficulty in letting others do housework and provide child care once I was home. My husband and I had a few arguments about that, but we managed to work it out.

Generally I am someone who is very independent. It drove me crazy to have everyone asking me if I was drinking enough, if I had put sun lotion on, if I 48 . Survivors’ Guide for Bone Marrow/Stem Cell Transplant had consumed enough calories ... .I suddenly felt I was being treated like a child again.

I’m not the breadwinner that I used to be, so the respect that I used to get has diminished some.

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