5 Things People with COPD Wish You Knew

Male doctor examining coughing patient in clinic

People living with COPD need to learn a lot of new information after a diagnosis. However, as people who live with COPD can tell you, there are some things they wish they’d known from the start. If you or someone you love have been newly diagnosed with COPD, here are the things you’ll want to know along the way. With this information at hand, you’ll be better prepared to live with this chronic disease and stay as healthy as possible over the years. 

1. You Don’t Deserve COPD. 

Regardless of the cause of your COPD, you do not deserve to have to live with a debilitating chronic disease. Many people who smoked for years and developed COPD feel deeply guilty and wish they had done things differently. One study showed that 67% of study participants blame themselves for having COPD and 78% wish they had done things differently to prevent the disease.[1] However, the study also found that only 38% of study participants were aware of COPD or of the risk factors of COPD before their diagnosis.1 Without education and awareness of the disease itself, it is hard to anticipate or do anything differently, even when you know that smoking is bad for you. 

Proper education can spur big changes in behavior. This same survey also showed that when patients are armed with the correct information, they will take steps to change their lives and improve their health. The survey found that after a COPD diagnosis, 68% of current smokers quit smoking. An additional 15% were actively working on quitting smoking.1 These numbers show just how willing most people are to make changes, when they understand what is necessary, to stay as healthy as possible. 

If you currently smoke it is a good idea to quit right away as smoking is a common cause of COPD. However, it is not the only cause. In fact, 15% of people with COPD have never smoked. While, ideally, no one would smoke, there is no benefit to spending your time feeling regretful or guilty. Do not punish yourself. No one deserves COPD.

2. You’re Not Alone.

Being diagnosed with a chronic disease like COPD can feel frightening and overwhelming. It can also make you feel like you are alone in coping and living with your disease. However, you don’t have to go through this experience alone. There are vast numbers of resources available to COPD patients, including educational information, treatment help and support groups

Getting help and support from other people who live with COPD can be extremely helpful because they understand what it’s like. As you introduce new treatments and make changes in your life, speaking with other COPD patients can make the difference between feeling isolated and feeling supported. Finding support groups can be an essential part of learning to live with COPD, and can help maintain your mental health and your quality of life. The American Lung Association offers a variety of resources to anyone managing COPD, including online support groups, a group for people living with lung conditions called Better Breathers Club and more.[2] You can also talk to your doctor about local support resources. Consider seeing a counselor, too, to talk through your experience. 

Speaking with your health care team is an essential part of ensuring that you feel fully supported. While it can take some getting used to, learn how to talk openly and honestly with your doctor about your body, your COPD symptoms, your emotional state and how your treatments are working, or not working, for you. Strong communication between you and your health care team will help you get the best possible treatment and results, but it will also help you see that you have partners in your care. 

3. Prepare for the Unexpected.

Living with a chronic disease like COPD means being prepared for a variety of different situations. Certain circumstances may make breathing more difficult for you. You should also have plans in place in case circumstances limit your access to essential treatments. Know what to expect as your disease progresses, what to expect when COPD exacerbations occur and what to do when the unexpected happens, including emergency situations. 

Preparing for emergencies is critical when you live with COPD, as it can be vital that you have access to your medications and other treatments, including supplemental oxygen. Ideally, patients with COPD who rely on oxygen therapy should go to a medical center to get the care and oxygen access they need during an emergency situation.[3] However, that is not always possible. Prepare for natural disasters, or any time you might lose access to power, by being ready for a disruption in access to any treatments you require. Whether or not you live in an area that is prone to natural disasters—including earthquakes, flooding, hurricanes, tornadoes and wildfires—make sure you’re ready for unexpected situations. 

Start with an emergency kit, which should include an emergency supply of oxygen if you rely on oxygen therapy, as well as any medication you need to treat your condition. It’s also important to have a copy of your medical information and prescriptions, so that emergency care teams can get you what you need right away. In addition, your emergency kit should also contain at least the following:[4]

  • Battery powered radio and spare batteries
  • Contact information for doctors
  • Emergency contacts
  • External battery charger and spare batteries for portable oxygen concentrator
  • First aid kit
  • Flashlight and spare batteries
  • Food and water for 72 hours
  • Emergency blankets

For more information about what to include in your emergency kit and how to make sure you are fully prepared for the unexpected, visit the American Red Cross or Ready.gov

4. Don’t Delay Seeing Your Doctor.

When it comes to the effectiveness of COPD treatments, early diagnosis is key. Many people delay seeing their doctor to check symptoms because they’re worried about the results or because they feel like it isn’t a big deal. Many people also mistake the early signs of COPD—which can include fatigue, a persistent cough, chest pressure and tightness, shortness of breath, frequent respiratory infections and mucus changes—as normal parts of aging. However any symptoms that are ongoing and impact your daily life should be checked out. 

As any current COPD patient can tell you, the sooner you see the doctor with potential COPD symptoms, the better the chance that your doctor will be able to provide the most effective treatment. While there is no cure for COPD, early and effective treatment can slow the progression of your disease and ease symptoms significantly. 

For many patients, oxygen therapy is extremely effective at treating shortness of breath, fatigue, chest tightness and other symptoms. Because it can improve oxygen levels and help you breathe easier, oxygen therapy can be an important part of COPD treatment. For patients who want to stay as active as possible, a portable oxygen concentrator, like those made by Inogen, can be life-changing. Rather than being burdened with heavy oxygen tanks and measuring time in minutes left in a tank, portable oxygen concentrators allow you enjoy an endless supply of oxygen as long as your unit has power. This technological breakthrough allows many COPD patients to maintain excellent quality of life on oxygen therapy. For patients with later stage COPD who may still struggle with shortness of breath even while on oxygen therapy, the Inogen Tidal Assist Ventilation System® can help. Because the Inogen TAV® provides a boost of oxygen right when you need it most, it can help relieve breathlessness. 

5. Save Up for Costs Associated with Disease Progression.

Getting the medical care and treatments you need can be costly over time, particularly if your insurance doesn’t cover certain parts of your treatment plan. For this reason, many people living with COPD wish they had saved up for ongoing costs. If you are diagnosed with COPD, start putting money aside so that you are prepared for costs that arise down the road. Even if you have excellent medical insurance coverage, saving an emergency fund is recommended. 

As your COPD progresses, you will need additional treatments to help you breathe better and get the oxygen you need. In many cases, that means ongoing oxygen therapy treatment. While some oxygen costs are covered, others may not be. Unfortunately, there are limitations to what many medical plans can offer. While some plans, like Medicare, will cover the rental of certain equipment, they may not cover a purchase.[5] Additionally, the oxygen equipment covered by your plan might not be a match for your oxygen needs. If that’s the case, saving up ahead of time can save you from worry, frustration and anxiety down the road. Also look into options like health savings plans (HSAs) or special financing. 

Contact our oxygen specialists at Inogen to find out more about whether you qualify for home oxygen and how to purchase an oxygen concentrator. We also offer free Medicare Eligibility Checks to help you learn whether you qualify for Medicare and if your equipment is covered. This all becomes significantly less stressful if you have money saved to cover costs that may arise. 

Take the advice of experienced COPD patients and plan ahead for living with COPD. With the right preparation and proactive measures, you can get the treatment and help you need. Let Inogen help. 

Sources:

[1] “COPD Knowledge Severely Lacking, Impacts Quality of Life, Care American Study Finds.” ScienceDaily, ScienceDaily, 30 July 2015, www.sciencedaily.com/releases/2015/07/150730080803.htm. 

[2] Topics: Health & Wellness COPD Lung Health and. “COPD: What Patients and Caregivers Should Know.” American Lung Association, American Lung Association, 14 Nov. 2016, www.lung.org/blog/copd-what-you-should-know. 

[3] Kobayashi, S., et al. “Home Oxygen Therapy during Natural Disasters: Lessons from the Great East Japan Earthquake.” European Respiratory Society, European Respiratory Society, 1 Apr. 2012, erj.ersjournals.com/content/39/4/1047#:~:text=In%20cases%20of%20natural%20disasters,of%20these%20patients%20during%20disasters. 

[4] Nelson, Sheri. “9 Emergency Preparedness Tips for People with POCs.” Inogen, Inogen, Inc., 22 Apr. 2020, www.inogen.com/blog/emergency-preparedness-oxygen-users/. 

[5] “Oxygen Equipment & Accessories.” Medicare.gov , U.S. Centers for Medicare and Medicaid Services, Accessed 26 Mar. 2021, www.medicare.gov/coverage/oxygen-equipment-accessories. 

 

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