The time before and after a transplant is associated with many questions, uncertainties and also fears for patients and relatives. Those affected who are networked in self-help groups know this from their own experience.
Even the news of a disease that is so severe that life can only be saved in the long term by a transplant changes life in the family: an often long, stressful waiting period, possibly professional problems, dealing with the issue of organ donation, experiences in the hospital, realisation of the lifelong need for aftercare and personal responsibility, dealing with medication, questions about life after the transplant and much more present new challenges.
First and foremost, a network of medical experts from various disciplines is needed to treat and support those of us affected.
For many people, the services offered by patient self-help groups are also very helpful. The exchange and conversation at "eye level" shows one's own situation from another perspective and helps in processing situations that are perceived as life-threatening. Additional information through knowledge exchange is a good basis for long-term organ preservation.