Idiopathic pulmonary fibrosis (IPF) is no doubt a chronic, fibrotic interstitial lung disease of rather an unknown origin. It has a median survival of three years but a wide range in survival rate which is indeed difficult to predict at the time of diagnosis. Specialist guidance does promote a patient-centered approach emphasizing regular assessment, information giving and supportive care coordinated by a multidisciplinary team (MDT). However an understanding of patient across the disease trajectory is rather limited and detailed guidance for MDTs on communication, assessment, and triggers for supportive and palliative interventions is lacking.
Patients diagnosed with IPF do have a clear understanding of their prognosis but little understanding of how their respective disease will indeed progress and how it will also be managed. One needs to carry out an in-depth analysis of the experiences of patients as well as those who care in order offers guidance for refining IPF clinical pathways.
One can consider ways to take care of oneself in a stressful time.
Below are self-care tips from other pulmonary fibrosis caregivers.
- Making time to be by oneself for quietness as well as to recharge.
- Exercising to keep one’s body fit and one’s mind sharp.
- Also one needs to get plenty of rest in order to stay healthy and be of strong, sound mind.
- Taking small get-a-ways, maybe a long weekend.
- If one’s loved one is in the hospital, one can consider leaving at night so that one can get much-needed rest.
- Keeping up on one’s own medical appointments. We do spend a lot of time at the hospital, but if we can avoid our own healthcare, then we are indeed jeopardizing our long-term health.
- Seek out talk therapy if one is feeling disconnected, guilty or alone.
- Spending a few minutes a day reflecting on when one’s partner was healthy and when one was not the ‘caregiver.
Health professionals do provide patients with information that does focus on living with IPF, thus encouraging them to make lifestyle changes as well as adaptations in order to improve the quality of life. Family members do need to receive education about IPF in order to support such changes. Patients also need to be encouraged so that they can join a support group and to participate in physical activity (again preferably group-based). This study does offer novel findings that will rather help inform much-needed changes in the practice of supporting IPF patients to cope up with their diagnosis and disease progression.
Treatment of Pulmonary Fibrosis
The lung scarring that does occur in pulmonary fibrosis cannot be reversed, and also no current treatment has indeed proved rather effective in stopping the progression of the disease. Some treatments may no doubt improve symptoms temporarily or even slow the disease’s progression. Others may on the other hand help improve the quality of one’s life. Doctors will, of course, evaluate the severity of the condition to determine the most appropriate treatment for it.