Newly Diagnosed. What Do You Do Now? How to Start Managing Your Lung Condition
I often refer to the stages of grief when a person is newly diagnosed with their lung condition. First the reaction is to deny that the condition really exists. I mean, do you really feel that bad that you actually have a lung diagnosis? The next stage you go through is anger. Who caused this to happen? You begin to question everything. Was it that your spouse smoked around you? Did your employer really do everything they could to avoid you inhaling those fumes? The third stage is bargaining or guilt. You say statements to yourself like, “If only I had just quit smoking earlier when I wanted to this wouldn’t be an issue.” Or “If I had known that the chemicals I was spraying in my job were toxic, I would have worn a mask.” The fourth stage of learning of your condition is often accompanied by depression. This includes worrying about the costs of the medical attention that you may require down the road or if it is safe to spend the time you desperately want with your grandchildren. Lastly, we get to acceptance. (This is the stage where empowerment begins.) We accept the diagnosis we have been given and we look for ways in which we can feel our best and live our lives to the fullest. This is where I come in. This is the stage in which I say to you… this is what you do next in order to start living with your lung condition and managing your diagnosis the best way you know how.
Here are 7 things you should do after you are diagnosed with a lung condition.
1. Don’t panic- You have just gotten through several stages to get you to the point of actual acceptance. If you start panicking a new level of stress can “kick in.” Take your time organizing your thoughts. Discuss your concerns with your doctor and perform the necessary tests (like PFT’s, CT’s, ABG’s, and X-rays) to give you a clear understanding of where you are in your diagnosis.
2. Assemble a healthcare team– Just because one physician diagnosed you with your condition, doesn’t mean they are the one that should continue to follow you through your lung diagnosis journey. Make sure you get a wonderful pulmonologist in your corner and see to it that they have good communication with your primary care provider. I often appreciate pulmonary offices that make it easy to contact them with your concerns. Whether their nurse be a phone call away or there is a “patient portal” available online that you have easy access to send messages to your physician… you want to make sure they are easy to track down in the event that you have an important question that needs answering or you are seeing changes that they need to know about.
3. Do your research on your diagnosis– The internet can be very scary in the sense that you may read about “worse case scenarios” that can be frightening. However, knowing about your specific diagnosis and what therapies are available to you can be empowering and lead to amazing conversation with your physician. Read as much as you can about your diagnosis, knowing that not every case presents or progresses the same. Don’t worry yourself about predicted outcomes etc. Learn about how your lungs seem to be affected by the diagnosis and what sorts of medicines or therapies can help slow the progression of the condition or make you feel less breathless.
4. Start eating right– Changing your diet can be one of the hardest things to adopt but what we put into our bodies to fuel and help fight illness is infinitely important. Eating the right foods will help you maintain your strength, muscle mass, and ward off infections. You cannot be your healthiest if you are constantly putting fast food, junk food, and processed food into your body. Start making small changes right away and continue to do so until you are confident that the food you are consuming each day is 90% good for you. Don’t deny yourself an occasional splurge. Moderation is the key.
5. Begin an exercise routine– This can be a daunting task when you are already short of breath, yet when we sit… we rot. You have to get up and start using your muscles and maintain (or build) your strength and endurance. Whether you start with a few visits to a pulmonary rehab, a Silver Sneakers program, or work with a personal trainer, start off “low and slow” and build your time, weight, and repetitions over time. Remember: Rome wasn’t built in a day and although it’s easy to remember our “old selves” and what we could do in our prime… this exercise prescription is forever. You will have plenty of time to work on improving your strength and endurance. Setting realistic goals with each visit will help you to see progress. Keep a journal of your activity to show your physician at follow up visits.
6. Get connected– Connecting with your specific diagnosis’s foundation will help keep you abreast of recent studies, new medicines on the market, and loads of education focused on your specific diagnosis. Sign up for their email and mailing lists to get recent updates. There are so many out there to mention but I’ll name a few:
The COPD Foundation (wonderful for those with diagnoses such as COPD, Emphysema, and Chronic Bronchitis)
NTM information and support (wonderful for those with MAC, Bronchiectasis, and Cystic Fibrosis)
7. Find support– I have said this before, and it may be a cliché, but there IS strength in numbers. You can find so many amazing support groups online or locally to get involved in. These support groups are positive and provide wonderful education to their members. Often, they will coordinate speakers who are subject matter experts in their field to help you on your journey with your lung diagnosis. I have to give a quick “shout out” to a couple that have supported me and that I know are doing a ton for their local and online communities. If you have pulmonary fibrosis check out PF Warriors (based out of Texas) and Breath Matters for all lung diagnoses (based out of Virginia). Facebook (as how many of you probably found me) has a ton of support groups tailored to managing specific diagnoses. I have found that many of the Facebook support groups are extremely active. Members post many times a day about questions and get amazing feedback from the group. If you want more ideas on how you can find support, I wrote an entire blog on “How to find support when you have a lung condition” several months back that may be worth the read.
Lastly, I want to say that when I sign off my blogs “We are in this TOGETHER.” I sincerely mean it. I feel it is a wonderful privilege that so many of you (over 1600 at last count) subscribe and want to hear from me each week. I don’t take that responsibility lightly and really have enjoyed this journey of “speaking words of encouragement” to you. Thank you for your continued support. Hopefully, I am providing the same to you!
Thanks for reading!
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