Resources

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

The Transition Home

We all look forward to the post-transplant period with great anticipation. Despite the joy that often accompanies leaving the security of the hospital and frequent doctor visits, the transition also brings up a lot of fears and anxiety. In fact, the overwhelming majority of respondents to the questionnaire found the recovery period and transition to the home as one of the more difficult phases of the transplant. One patient articulated her feelings as follows: There were two periods which I found most difficult. The first was moving to outpatient status [at the transplant center] and having to deal with everyday stuff, and then it was returning home and having to deal with even more everyday stuff. Your limitations and lack of immediate support is tough. In the hospital everything is taken care of for you--if an unexpected glitch happens, care is right there. As joyful as I was to be out of the hospital, I experienced a lot of anxiety trying to acclimate back into the world again. What helped most for me was to try to communicate my needs and fears to family and friends. I learned that I had to ask when I needed something and not expect people to automatically know what it was that I needed.

The transition was very difficult because I was afraid of not having the nurses etc. at my finger tips. I had to develop a different type of responsibility for caring for myself. I felt I was breaking away from a safe, enclosed environment and having to face a world that did not know my condition. It was very scary.

I was not prepared for the extreme fatigue post-transplant and the amount of effort and energy it took to just take care of basic day to day tasks.

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