Your future with idiopathic pulmonary fibrosis (IPF) may look uncertain, but it’s important to take steps now that will make the road ahead easier for you.
Some steps involve making lifestyle changes right away, while others require you to think ahead and prepare accordingly.
Here are some considerations to make after an IPF diagnosis.
Organization can help you better manage your IPF in several ways. It’ll help you manage your treatment plan, including medications, doctor’s appointments, support group meetings, and more.
You should also consider organizing your physical living space. You may have difficulty moving around as your IPF progresses. Put household items in places that are easy to access and keep them in their designated space so you don’t have to search your home for them.
Use a planner with appointments, treatments, and social obligations to help you stick to your treatments and prioritize what’s important. You may not be able to commit to as many activities as you did before your diagnosis, so don’t let your calendar get too busy.
Finally, organize your medical information so loved ones or medical staff can help you manage IPF. You may need more help over time, and having organizational systems in place will make it easier for people to assist you.
You may have to scale back on the number of activities you engage in as IPF symptoms progress, but you shouldn’t retreat from life entirely. Find ways to stay active and get out to enjoy what you can.
Exercise can be beneficial for many reasons. It can help you:
- improve your strength, flexibility, and circulation
- fall asleep at night
- manage feelings of depression
You may have trouble keeping up an exercise routine if your symptoms worsen. Talk to your doctor or your pulmonary rehabilitation team for advice on how to exercise with IPF.
There are other ways to stay active that don’t include physical exercise. Engage in hobbies you enjoy or social activities with others. If you need to, use a mobilized device to help you navigate outside or around your house.
Smoking and secondhand smoke can worsen your breathing with IPF. If you smoke, talk to your doctor about how to quit after your diagnosis. They can help you find a program or a support group to help you quit.
If friends or family members smoke, ask them not to do it near you so you can avoid secondhand exposure.
After your diagnosis, it’s a good idea to learn as much as you can about IPF. Ask your doctor any questions you have, research the condition on the internet, or find support groups for more information. Make sure the information you gather is from credible sources.
Try not to only focus on the end-of-life aspects of IPF. Learn how you can manage symptoms and keep your life active and full for as long as possible.
Stress or emotional strain after your IPF diagnosis is common. You may benefit from relaxation techniques to reduce stress and ease your mind.
One way to reduce stress is by practicing mindfulness. This is a type of meditation that requires you to focus on the present. It can help you block out negative emotions and reframe your state of mind.
You may find other forms of meditation, breathing exercises, or yoga helpful in reducing stress as well.
In addition to stress, IPF can lead to mental health conditions like depression and anxiety. Talking to a doctor, counselor, a loved one, or a support group may help your emotional state.
Cognitive behavioral therapy with a mental health professional may help you work through your feelings about the condition. In some cases, your doctor may recommend medications to address specific mental health conditions.
Don’t let the outlook of IPF interfere with your treatment plan. Treatments can help improve your symptoms as well as slow down the progression of IPF.
Your treatment plan may include:
- regular appointments with your doctor
- oxygen therapy
- pulmonary rehabilitation
- a lung transplant
- lifestyle modifications like changes to your diet
It’s important to be aware of your surroundings so you can avoid environments that increase the severity of your symptoms.
Reduce your risk of getting sick by washing your hands regularly, avoiding contact with those who have colds or flu, and getting regular vaccinations for flu and pneumonia.
Stay away from environments that have smoke or other air pollutants. High elevations can also cause breathing difficulty.
Try to put your financial documents and end-of-life plans in order after your IPF diagnosis. While you don’t want to dwell on the outcome of the condition, taking care of these items may give you peace of mind, direct your treatment, and help your loved ones.
Gather your financial records and communicate the information to someone who will manage your affairs.
Make sure you have a power of attorney, a will, and an advance directive. Your power of attorney serves as the decision maker for your medical care and finances if you’re unable to do so. An advance directive will outline your wishes for medical interventions and care.
It’s important to learn about medical services and other services you may need in the future. This will help provide you and your loved ones with support as your lung function decreases.
Palliative care focuses on managing pain, and not just at the end of life. Hospice care is available for those who may only have six months or less to live. You can receive both types of care at your home or in a medical care setting.
There are many ways you can manage your quality of life and prepare for the challenges that follow an IPF diagnosis.
Equipping yourself with helpful information, staying engaged and active, following your treatment plan, and preparing your end-of-life affairs are some of the ways you can move forward.
Make sure to ask your doctor or medical team about any questions you have as you navigate life with IPF.