Resources

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

Recommendations for Coping During Recovery

Although it is difficult to know ahead of time how the transition period from the hospital to the outpatient phase will be for you, keep in mind that recovery is a long-term process that does not always proceed in a smooth linear fashion. The following are suggestions by transplant survivors of how to cope during this transition period: Let family and friends know that you don’t just want to lie around—have them bring you things you can do; or else, plan ahead and have a project that you can work on for as little or as much time as you want while you are recuperating. Talk to your friends on the phone when you are feeling lonely and restricted.

I think what helps me to cope is having someone to talk to. For me, it has been a counselor and very few special people that I have felt have been able to understand all my complicated emotions. Second, having some type of daily, weekly and monthly goals helped to keep me going each day. The goals could be anything. For me it was learning to play the guitar, exercising, cooking ... anything that I found enjoyable and lastly giving myself permission to feel sad and depressed—I think one needs to experience their emotions in order to work through them and then to move beyond them.

One survivor found the following attitude helpful:

I ... work under the assumption that Murphy’s Law is always in effect. That way blown veins, low platelet counts, and nonexistent white counts are to be expected ... then I can be delighted when things go as planned. It’s all in the attitude--and I’d rather laugh about it than drive myself up a wall worrying about what might happen.

Celebrate Landmarks
Often during the ups and downs of recovery, it is difficult to see the bigger picture and to appreciate how far you have come. Marking special dates such as your six month or one year anniversary with celebrations can serve as an important reminder of your progress:

I had a big party for my one year anniversary in which I invited all the people who had been involved and had sustained me through my difficult year. Seeing everyone I loved gathered in one room, all celebrating this momentous day, made me feel very privileged and helped me realize how much progress I had made.

Another way to mark your progress is to give yourself a special treat at the end of a designated period. One patient recommends the following:

I suggest that all BMTers set a reward goal for themselves. Early on I said that when I reach ten years out I’m buying myself a classic car. I am the proud owner of a 1956 Ford T-Bird! Make the reward a BIG ONE. It’s earned. And you never know how much time ya got!

Contact Your Donor
Generally the bone marrow registry will not allow you to contact your donor directly until one year post-transplant. Until the one year time period is up, however, exchanging letters anonymously with your donor through the donor program can be very gratifying. Once you are given access to your donor’s name and address a year post-transplant, meeting him or her can be very rewarding:

Finally getting the name and phone number of my donor was extremely exciting. I had wondered for so long who she was, what she was like, and what had motivated her to sign up for the registry and donate marrow. Being able to hear her voice and then to meet her, express my gratitude and solidify that bond was extremely meaningful.

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