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What does it take to develop a relationship with your primary healthcare provider, pulmonologist (lung doctor), respiratory therapist, pharmacist, and all the other members of your healthcare team? Honesty. Teamwork. Preparation. Support from others. Here are some ideas to consider and actions to take—both before and during your visit to your healthcare provider—to help further your relationship with your healthcare team and better manage your condition.

Connect with Your Healthcare Team

While your healthcare team can help you make appropriate decisions, it's also important for you to take charge and stay organized. Speak up for yourself, be proactive, and try to stay on top of your plan and condition.

Actions to take

  • Make a list of all the medications you take, including supplements and oxygen therapy. Read More
  • Keep a running list of any symptoms you have.
  • Jot down any questions you have about things you read.
  • Discuss any goals you'd like to set for yourself and accomplish with your healthcare provider's help. Close

Your friends and family probably want to help. And it's up to you to direct them and let them know exactly what you need. Whether it's driving to an appointment or filling your prescription, give your friends and family specific tasks to do.

Actions to take

  • Find an "in case of emergency" contact to drive you to the doctor if you can't get there on your own. Read More
  • Gather phone numbers and available hours of those on your healthcare team. Make sure to share them with your friends, family, and "in case of emergency" contact.
  • Keep a list of all the medications you're taking with you in case you are in an emergency situation so the healthcare professionals treating you can avoid any potential drug interactions. You may also want to share this list with your friends and family.
  • Talk to your friends and family about COPD so they have a better understanding of what you're going through.
  • Write down the names of everyone willing to help and assign them each a task. Talk to them about what you need and see if the assigned task is okay with them. Close

It's up to you to keep track of the information you receive from your doctor, pulmonologist, pharmacist, respiratory therapist, and any other members of your healthcare team. If you're unsure about handling this by yourself, try to enlist a friend or family member to help.

Corazetter — You let people be nice to you

Our family reunion was in July of last year. We all drove to Chicago together for it. They took such good care of me, and you know, early on I was resistant to that kind of a treatment.  Read More  Read More Now I just eat it up. You let people be nice to you. If they want to let me go first in line, I'll do that. You want to get a plate of food for me, you can do that for me—those kinds of things, especially if there is a crowd.

Let people help you at the airport. Everything is so far away. They have a whole collection of wheelchairs for you, and you could ask for one ahead of time. When you get there, they come to your car and get you with the wheelchair and just scoot you all around the place. And it's wonderful. Close Close

Actions to take

  • Ask your pharmacist for suggestions on how you can better manage your refills.  Read More
  • Ask your healthcare team if there's anything you can do to be more prepared for your visit.
  • Keep phone numbers and available hours of those on your healthcare team easily accessible. This may mean programming them into your phone or writing them on a piece of paper that you can keep handy.
  • Keep information you receive from the members of your healthcare team in a folder, and let everyone on your support team know where you keep this information. Some items to keep track of are:
    • Dates and results of checkups and screening tests
    • All the medicines you take, including the condition you take them for and the dosage
    • Dates of any vaccines you've received
    • Any allergies you have
     Close

Living with COPD can be unpredictable. You may notice new symptoms when the weather changes. Or perhaps you're thinking of going on vacation and aren't sure how to travel with oxygen. Make sure to determine with your healthcare provider what concerns require a call and/or a visit. Make sure you have a plan in case of an emergency.

Marianne — Asking a million questions

My mother brought us up to ask a million questions, and that's what I've done my whole life. Read More  Read More I want to know why, how, when, where, all those things. That's the best way to learn.

We can't cure COPD, but we can try to stay healthier, you know? And that's what I did. I started researching—Internet, people, the doctor and where I go for pulmonary rehab, and I asked a million questions. And I learned. There are no stupid questions—ask everything.

My pulmonary doctor—we've got a wonderful relationship. He's very open and honest with me. Of course I am with him. And it's really good. I feel good about going to see him. And I feel good about how well I'm doing. Close Close

Actions to take

  • Find an "in case of emergency" contact to drive you to the doctor if you can't get there on your own. Read More
  • Gather phone numbers and available hours of those on your healthcare team. Make sure to share them with your friends, family, and "in case of emergency" contact.
  • Complete the COPD CHECKLIST to help you and your doctor keep track of any new or abnormal COPD symptoms you're experiencing. Take this CHECKLIST to your doctor's appointment to help guide your conversation. Close

Your doctor will help you learn to identify a flare-up or worsening of COPD symptoms and give you instructions to use in the event of a flare-up. A flare-up (commonly referred to by healthcare providers as an "exacerbation") can happen suddenly, so it's important to know what to do if one occurs.

Actions to take

  • Develop an Action plan to complete with your healthcare provider in case of a flare-up. Learn more.
    Read More
  • Find an "in case of emergency" contact to drive you to the doctor or emergency facility if you can't get there on your own. You can also call 9-1-1.
  • Gather phone numbers and available hours of those on your healthcare team. Make sure to share them with your friends, family, and "in case of emergency" contact.
  • Share the instructions from your healthcare provider with your family, friends, and emergency contact as well.
  • Keep a list of all the medications you're taking with you in case you are in an emergency situation so the healthcare professionals treating you can avoid any potential drug interactions. Close

Everyone's plan is unique. Yours may include oxygen, pulmonary rehab, exercise, nutrition, and/or other treatments. It's good to understand the importance of all the components of your COPD treatment plan.

John — I need more calories

I've always been thin, but I was even thinner than normal, because I was burning so many calories because of my lungs trying to work. Read More  Read More So I need to have more calories than the normal person. That doesn't mean eating unhealthy. With the conditions of COPD, there are a lot of things that I do for myself just to keep from feeling weaker and lower. I get my flu shot each year, which is important and just not going out into a large crowd if I'm starting to feel like maybe a cold is coming. Close  Close

Actions to take

  • Complete the COPD CHECKLIST to help you and your doctor keep track of any changes in COPD symptoms you're experiencing. Take this CHECKLIST to your doctor's appointment to help guide your conversation.  Read More
  • Find out more about the roles of a respiratory therapist and the other members of your healthcare team. Learn more.
  • Write down any thoughts or questions you have about using oxygen, and share them at your next visit.
  • Learn more about pulmonary rehab (PR), or ask your healthcare provider about PR programs in your area.
  • Make sure to discuss any concerns you have about exercising and ask what to watch out for.
  • Ask for specific instructions on exercising and how often. Get ideas for exercises and learn more about pursed-lip breathing.  Close

Quitting can be very difficult, and it's important to be honest with your healthcare provider if you're still smoking. Smoking can affect components of your treatment plan. Your healthcare provider needs to be aware so that he or she can adjust your plan accordingly. If you're cutting down and trying to quit, let your healthcare team know about any issues you're having and see if there are any ways to quit that you'd like to explore together.

Actions to take

  • Tell your healthcare provider if you're still smoking. Read More
  • Write down all the medications you're taking, including oxygen, and share them with your healthcare team.
  • Write down any thoughts or questions you have about using oxygen and share them at your next visit.
  • Share your concerns about quitting.
  • Use your healthcare team for support with quitting.
  • Find information to help you quit.
    Close

Work with your healthcare team to see what new habits can complement your daily routine. Make sure to ask about other healthcare professionals who may be able to help you set and keep goals, like a smoking cessation specialist or nutritionist.

Actions to take

If you notice something happening to your health that is different than normal—good or bad—make sure to share it with your healthcare provider. Don't hold back. No detail is too great or too small. Even if something seems unrelated to your COPD, it may be something your healthcare team should be aware of. It's important to be honest and up front so that your healthcare team can help find the best course of action for you.

Actions to take

  • Work with your healthcare provider to talk about your current symptoms and what you should be watching out for. Read More
  • Complete the COPD CHECKLIST to help you and your doctor keep track of any changes in COPD symptoms you're experiencing. Take this CHECKLIST to your doctor's appointment to help guide your conversation.
  • Keep a journal or download an app for your tablet or smartphone to help track your symptoms. There are some apps available at no cost. Close

Make sure to talk about any other treatments, including all medications, supplements, pulmonary rehab, exercise, nutritional guidance, weight loss management, oxygen therapy, or holistic treatments, as these may impact your COPD management plan.

Actions to take

  • Write down all the medications you take.
    Read More
  • Write down all the supplements or other holistic treatments you use.
  • Write down how often you do pulmonary rehab and/or exercise.
  • Monitor your diet if you're seeking nutritional guidance or following a weight loss plan.
  • Consult your pharmacist every time you fill a new prescription to make sure it's safe to take it with your other medications. Close

There may be things that you haven't noticed before that trigger your COPD symptoms. Make sure to write down any new triggers you notice, along with any symptoms that accompany them.

Janet — Finding the right doctor for you

I have a pulmonary doctor who is very important to me. I had been with a group of doctors who all worked together, and none of them ever really got to know the real me. Read More  Read More So I found a doctor who works on his own who was recommended by a nurse friend of mine. He's the perfect doctor. He put me on a whole new schedule, and I believe for the shape that my lungs are in that he's absolutely done the best that can be done for me, and I have total faith in him. I've chosen wisely and I have excellent doctors. And, if they weren't excellent when I first went there, I changed until I found one that was right for me.  Close  Close

Actions to take

  • Keep track of anything that triggers your COPD symptoms. Read More
  • Share this list with your healthcare provider each time it changes.
  • Take measures to stay away from anything that can trigger your COPD.  Close

If smoking is still a part of your life, it's important to be truthful with your healthcare provider. While it can be difficult to quit, your healthcare provider needs to know if you're still smoking and how much you're smoking. If you're trying to quit, let your healthcare team know about any issues you're having, and see if there are any ways to quit that you'd like to explore together.

Actions to take

  • Be honest with your healthcare provider if you're still smoking. Smoking could interfere with your treatment plan and pose a danger with oxygen usage. Read More
  • Ask your healthcare provider about information for quitting smoking. Learn More
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