By: Alicia McAuliffe-Fogarty, Ph.D., Vice President of Research and Client Success at PatientsLikeMe
Transplant surgeries have come a long way over the years, but unfortunately, there are still many risks involved with these life-saving procedures. It is normal for patients and family members to feel a range of emotions during the transplant journey – from hope to fear and everything in between. Let’s explore some of the best ways to maintain your physical and emotional health pre- and post-transplant, whether you are a patient or a caregiver.
Identify and educate yourself on potential risk factors
Once you find out you need a transplant, getting ready for surgery can start immediately, even though you might need to wait for a donor organ. Some things you can do before surgery to ensure you’re prepared include:
- Take all your medications as directed by your doctor or care team.
- Move your body (to the best of your ability) and eat healthy foods like fruits, vegetables, lean protein, and whole grains.
- Practice good sleep habits
- Regularly engage in stress management strategies
- Make sure your caregiver arrangements are in place to avoid any additional stress.
One of the most common risk factors following an organ transplant surgery is the possibility of infection. Out of the ~200,000 adult transplants per year, CMV infection is one of the most common viral infections experienced by transplant recipients, with an incidence rate of around 8-75% in SOT recipients, depending on the type of organ transplanted and 5-30% in HSCT recipients.
Get your hands on the necessary resources
Although this is a difficult journey, the best way to prepare is to become an informed patient or caregiver. We never want patients to feel alone in this process, and we aim to provide information and resources to further benefit the transplant community by assessing the overall patient experience, including aspects of quality of life, symptom management, health data tracking, the value of goal attainment, as well as evaluating the impact this procedure can have on loved ones.
Share your experience with your community
At PLM, we are focused on expanding our community of patients who have or will have a transplant, and their caregivers support them and better understand the patient journey and optimize their experience through digital innovations and education with the goal of improving outcomes. We are committed to elevating the patient voice and improving their overall experience and care outcomes, but we can’t do it without you.
PLM is currently conducting research to identify best practices around coping strategies, understand CMV symptoms and treatment effectiveness, identify changes in care journey experiences, and better connect patients and their care providers.
To participate in the study as a patient or a caregiver, visit our website and join our platform today.