Your doctor has told you that you have pulmonary fibrosis. Suddenly, you are faced with a life-altering condition. So what now? You have decisions to make, but the one that matters is how to approach your future so you can get the most out of it. Think about how to cope with your pulmonary fibrosis diagnosis by taking these steps.
Face your limitations
You will already have noted that you can’t do what you used to be able to do. Accepting that your physical condition has changed and will continue to change is probably one of the most difficult limitations you will have to face, especially as your disease progresses. So, be realistic about your limitations, but focus on what you CAN do instead of what you can’t.
Moderation is key
One of the best ways of coping with pulmonary fibrosis is to maintain as high a level of fitness as is reasonably possible. There are plenty of exercises you can do that will keep you active without compromising either your lungs or your general health. Walking is a low-impact exercise that anyone can do. You can still do bike rides, just not as fast or as long as you might have done previously.
Swimming is another relatively low impact exercise that is good for the lungs. Take advantage of weight machines at the gym and do strengthening exercises. However, as with anything to do with your condition, consult your doctor or health professional before undertaking any exercise regimen.
Watch your meals
Your doctor will recommend you reduce, if not eliminate, sodium, trans fats and sugar from your diet. Eat fresh fruits and vegetables, lean proteins, whole grains, low-fat dairy products and avoid processed foods. Since a full stomach can make it harder to breathe at times, stick to smaller, regular meals and take a systemic enzyme capsule with water between meals to help break down the fibrin that causes the scarring in your lungs.
Think of your lungs
You probably never really thought about your lungs before you received your pulmonary fibrosis diagnosis. Now they are front and center for all your decision making. Pretty much every activity you do now involves thinking about how it impacts your respiratory system. This includes taking precautions about what you’re breathing in.
Whether it’s second-hand smoke, pollution or germ-laden air from people with colds, you need to bear in mind that your lungs don’t have the same capacity to cope with airborne illnesses and issues as they once did. You should also consider how you will cope if you get the flu or pneumonia, so if there’s a vaccine available to you — take it.
This can be hard, especially if you’ve always prided yourself on your independence. Ask for help from family, friends, support groups and the medical community.
Fortunately, there are plenty of others in a similar position, facing challenges from PF or COPD. Your condition can worsen if you suffer from anxiety, stress or depression, so ask for help from the many support groups, forums and community help systems available to people in your condition.
Stay in control where you can
Your doctor and medical team are there to help you, but they can only do so much. You need to listen to them and follow their instructions. But this doesn’t mean you don’t have the right to question what they are saying and why.
Asking questions about your treatment, keeping records of what works and what doesn’t and staying involved will all help you better understand your condition and how you can help yourself. You can also keep an eye out for any risk triggers and avoid them.
Focus on the positives
This all sounds depressing, doesn’t it? It doesn’t have to be. Yes, you have a dangerous condition, but as you will know from discussions with your doctor, everyone reacts differently to pulmonary fibrosis. Even the average time it takes for the condition to deteriorate varies. So make the most of the positive aspects. As for the negative aspects, try out some stress-reducing mindfulness techniques or guided meditations to help with pain.
Do what you enjoy when you can. Travel may be more difficult than it once was, but it isn’t impossible. You just have to be a bit more forward-thinking in your planning, especially if your plans include flying or traveling to places with a higher altitude than you’re used to. If you’re dependent on an oxygen machine, make sure it’s in perfect working order and that you have a backup.
Finally, stay in touch
PF Now! hosts a virtual support group on Zoom every month. Not only will you strengthen your network of connections but you’ll learn firsthand how those with PF best look after themselves. PF Now! also has a Facebook group whose active community shares their PF journey and their tips with others.
Never disregard professional medical advice or delay in seeking it because of any information received from us.