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Survivorship Guide for Bone Marrow/Stem Cell Transplant
Coping with Late Effects

Late Effects of the Transplant

The transplant experience can affect us physically, emotionally, mentally, and spiritually – with some people facing more effects than others. It can also affect our social relationships, our ability to work in the same profession or with the same intensity as in the past, and all this impacts our quality of life. Some survivors, once they are two or more years out, leave the transplant experience behind with few or no lingering problems. Others, however, may deal with ongoing challenges and complications that can affect many aspects of life.

A majority of transplant recipients do not experience a full restoration of health,^[1] and it is estimated that at two years after transplant more than 25% of survivors have ongoing bothersome medical symptoms.^[2] However, a recent study found that at ten years out, survivors are nearly as healthy as adults who have never had a transplant. Overall, survivors did not experience more hospitalizations or outpatient medical visits and had similar rates of conditions, such as asthma, diabetes, high blood pressure, and high cholesterol, as people who had not undergone a transplant. But, they did report a higher incidence of certain medical problems, including musculoskeletal complaints (stiffness and cramping), sexual problems, and a higher use of antidepressants and anti-anxiety medications.^[3] Survivors are also more likely to experience cataracts, thyroid hormone deficiency, bone thinning (osteoporosis), and secondary cancers.^[4]

Although some survivors view their health as worse than a typical person their age, they also report positive changes, such as greater personal growth,^[1] an enhanced appreciation for life, greater appreciation of friends and family, different priorities, and a shift in life expectations. How these gains and losses play out is different for each individual, with some people experiencing more of the benefits and others feeling the losses more acutely. Here is how several different survivors sum up their experience:

I feel that I lead a more balanced life now. I definitely take more time to appreciate what life has to offer. However, I am constantly fearful of what health problems lie ahead (relapse, secondary cancers, etc.).

Since the transplant I have experienced physical problems as well as depression, fear, and profound anxiety that have been very debilitating.

Life after transplant is tough. I realize the transplant is always going to be part of my life. I have a scar where my Hickman catheter used to be; I have a bump on my scalp where a port was in my head. I wonder why I got sick since I had led such a healthy lifestyle before. I never even took aspirin before I got sick. My world has changed so much.

I feel mostly as strong and healthy today as before the transplant. The difference is that I can’t push myself as hard. I need to take breaks when I start to falter (rather than work through it).

I feel better and healthier since the transplant. I am back 100%.

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