Resources for COPD Patients & Caregivers

Resources for Patients & Caregivers

Resources for Patients & Caregivers

SECTION 1 – Diagnosis

What is COPD?  How do you know if you have COPD and what to do if you have it?  Attached are some basic resources screening for your risk of COPD, what COPD is, the lung test to find out if you have COPD, and other basic information.

COPD Population Screener

Take the COPD Population Screener

 

 

COPD May Take Away More Than Your Breath

http://hawaiicopd.org/documents/COPD84822MHC_COPD_May_Take_Away_More_onepager.pdf

Spirometry and COPD Testing Health Your Lungs Master

http://hawaiicopd.org/documents/Spirometry-and-COPD-Testing-Health-Your-Lungs-Master_10134-18.pdf

Spirometry and COPD (Spanish)

http://hawaiicopd.org/documents/COPD158604MHC_Spirometry_and_COPD(Spanish).pdf

Spirometry and COPD (English)

http://hawaiicopd.org/documents/COPD158603MHC_Spirometry_and_COPD_onepager1.pdf

PFTs for COPD

http://patients.thoracic.org/information-series/en/resources/pulmonary-function-tests-in-copd.pdf

PFTs for COPD Spanish

http://patients.thoracic.org/information-series/es/resources/10pruebas.pdf

COPD Foundation Resources COPD & YOU

http://www.copdfoundation.org/COPDYou.aspx

Genetics and Lung Disease

There is a genetic form of lung disease called Alpha-1 Antitrypsin Deficiency.  It can be detected with a simple, free confidential blood test which involves having your finger pricked and drops of blood put on a special test kit and mailed to a lab for analysis.  Treatment for this genetic form of lung disease is different from the treatment of people without this genetic condition.

The National Heart Lung Blood Institute funded COPDGene.org study to find out more about genetics and COPD, by studying 10,000 people at 21 clinical sites throughout the U.S.  More information is available here:

About COPD Gene Study

http://www.copdgene.org/about-copdgene-study

Chronic Cough By American Thoracic Society

http://patients.thoracic.org/information-series/patient-health/PHSCough.pdf

A1AD – Genetic Form of Emphysema By American Thoracic Society

http://patients.thoracic.org/information-series/en/resources/what-is-alpha-1-antitrypsin-deficiency.pdf

A1AD – Genetic Form of Emphysema By American Thoracic Society (Spanish)

http://patients.thoracic.org/information-series/es/resources/14alfa1.pdf

COPD Foundation Resources

http://www.copdfoundation.org/Resources.aspx

Resources for Patients & Caregivers

SECTION 2 – Living with a Chronic Condition

OK, you know you have COPD and maybe some other health conditions that you will have for the rest of your life.  What now?  Below are some resources to help you thrive with these conditions, living as full and active a life as possible.

COPD Foundation Resources Page

http://www.copdfoundation.org/Resources.aspx

Creating New Vision–Life with Chronic Disease

http://hawaiicopd.org/documents/Creating-New-Vision-Life-Chronic-Illness-Master_10134-10.pdf

Talking About COPD (Master)

http://hawaiicopd.org/documents/Talking-About-COPD-Master_10134-20.pdf

Talking about COPD

http://hawaiicopd.org/documents/COPD84816MHC_Talking_About_COPD_onepager1.pdf

Talking about COPD (poster)

http://hawaiicopd.org/documents/COPD84901MHC_Talking_about_COPD_(poster).pdf

Talking about COPD (Spanish)

http://hawaiicopd.org/documents/COPD104705MHC_Talking_About_COPD(Spanish).pdf

Living with COPD

http://hawaiicopd.org/documents/COPD84815MHC_Living_with_COPD_onepager.pdf

Living with COPD (Spanish)

http://hawaiicopd.org/documents/COPD104500MHC_Living_with_COPD_onepager(FPO)(Spanish).pdf

COPD Assessment Test

Take the COPD Assessment Test

Take the COPD Assessment Test

Preparing for Emergency

http://patients.thoracic.org/information-series/patient-health/PHSEmergency.pdf

Caregiving

http://hawaiicopd.org/documents/Beyond-Just-Getting-By-Caregiving-Master_10134-03.pdf

Resources for Patients & Caregivers

SECTION 3 – Treatments

*Resources below help you organize your treatments and plan for living well with COPD.  There is information on questions to ask your healthcare provider or doctor, an action plan you can create with your provider, and much more.

Living with COPD (Master)

http://hawaiicopd.org/documents/Living-With-COPD-Master_10134-13.pdf

Living with COPD

http://hawaiicopd.org/documents/COPD84815MHC_Living_with_COPD_onepager.pdf

Living with COPD (Spanish)

http://hawaiicopd.org/documents/COPD104500MHC_Living_with_COPD_onepager(FPO)(Spanish).pdf

Talking About COPD (Master)

http://hawaiicopd.org/documents/Talking-About-COPD-Master_10134-20.pdf

Talking about COPD

http://hawaiicopd.org/documents/COPD84816MHC_Talking_About_COPD_onepager1.pdf

Talking about COPD (poster)

http://hawaiicopd.org/documents/COPD84901MHC_Talking_about_COPD_(poster).pdf

Talking about COPD (Spanish)

http://hawaiicopd.org/documents/COPD104705MHC_Talking_About_COPD(Spanish).pdf

COPD Checklist and Action Plan

http://hawaiicopd.org/documents/COPD-Checklist-&-Action-Plan-Master_10134-16.pdf

COPD Checklist and Action Plan (Spanish)

http://hawaiicopd.org/documents/COPD-Checklist-&-Action-Plan-Spanish-Master_10134-16.pdf

COPD Exacerbations

http://hawaiicopd.org/documents/COPD84819MHC_COPD_Exacerbations_onepager.pdf

When COPD Symptoms Get Worse (Spanish)

http://hawaiicopd.org/documents/COPD104802MHC_When_COPD_Symptoms_Get_Worse(Spanish).pdf

Chronic Cough – By American Thoracic Society

http://patients.thoracic.org/information-series/patient-health/PHSCough.pdf

A1AD – Genetic Form of Emphysema – By American Thoracic Society

http://patients.thoracic.org/information-series/en/resources/what-is-alpha-1-antitrypsin-deficiency.pdf

A1AD – Genetic Form of Emphysema – By American Thoracic Society (Spanish)

http://patients.thoracic.org/information-series/es/resources/14alfa1.pdf

Resources for Patients & Caregivers

SECTION 4 – Medications

There are lots of different medications currently available and more in research and pending approval.  Taking medications regularly as directed is an important part of staying as healthy and active as possible.  Be sure to work closely with your prescribing healthcare provider and pharmacist to have any questions about your medications answered, so you are taking your medicines as effectively as possible.  Keep a diary to note any possible reactions, improvements, problems that may be connected with any of your medications; summarize and share the information with your healthcare provider.  Periodically demonstrate how you take your medications to your healthcare providers and/or pharmacist, to be sure you’re getting as much as possible from your treatments.  Also included is information about spacers, which can be used with many inhalers and help reduce side effects and improve delivery of medicine.

Know Your Medicines

http://hawaiicopd.org/documents/Know-Your-Medicines-Master_10134-12.pdf

Medications – By American Thoracic Society

http://patients.thoracic.org/information-series/en/resources/medicines-used-to-treat-copd.pdf

Medications – By American Thoracic Society (Spanish)

http://patients.thoracic.org/information-series/es/resources/09medicamentos.pdf

 

Videos by American College of Chest Physicians Foundation*

*How to use an Inhaler

http://m.youtube.com/watch?v=w121-xskSU8

*How to use a Spacer

http://m.youtube.com/watch?v=xWwPbdVKkFk&feature=related

COPD Foundation Resources

http://www.copdfoundation.org/Resources.aspx

Resources for Patients & Caregivers

SECTION 5 – Exercise

“Use it or lose it,” definitely applies to those of patients with lung conditions.  The more patients do, the more they CAN continue to do.  Conditioned muscles use oxygen much more efficiently than deconditioned muscles.  Resources on safely exercising to remain as active and healthy as follow are below.  Work with your healthcare provider to be sure to exercise safely.  Ask about whether referral to a physical therapist or other specialist can help you regain conditioning and develop a personalized exercise plan or program.  There are many exercise programs available at low and no cost in the community; check around to see what works best.

Thanks to PERF2ndwind.org for graciously haring this excellent, comprehensive resource about exercise and pulmonary rehabilitation:

Essentials of Pulmonary Rehabilitation

http://www.perf2ndwind.org/Essentials-2005.pdf

COPD Diet Fitness & Moods (Master)

http://hawaiicopd.org/documents/COPD-Diet-Fitness-Moods-Master_10134-15.pdf

 

Resources for Patients & Caregivers

SECTION 6 – Pulmonary Rehabilitation

Pulmonary Rehabilitation is a comprehensive program which covers educating patients and caregivers about COPD and how to live active and healthy lives with COPD.  It covers a large range of subjects including treatments, medications, infections, exercise, nutrition, feelings, and other topics.  It is reimbursed by many insurers and Medicare and Medicaid.  Unfortunately there are very few programs in our state and nation.  Materials here are useful to use in connection with your healthcare provider, to develop a customized plan for yourself and loved one.

*Thanks to PERF2ndwind.org for graciously haring this excellent, comprehensive resource about exercise and pulmonary rehabilitation:

Essentials of Pulmonary Rehabilitation

http://www.perf2ndwind.org/Essentials-2005.pdf

COPD Diet Fitness & Moods (Master)

http://hawaiicopd.org/documents/COPD-Diet-Fitness-Moods-Master_10134-15.pdf

 

Pulmonary Rehabilitation by American Thoracic Society

http://patients.thoracic.org/information-series/patient-health/PHSPulmonaryRehabilitation.pdf

COPD Foundation Resources

http://www.copdfoundation.org/Resources.aspx

Resources for Patients & Caregivers

SECTION 7 – Oxygen

Supplemental oxygen can be a useful treatment for patients whose lungs are not able to provide enough oxygen using room air.  Oxygen is delivered in several different forms, and it helps keep the brain, heart, lungs and entire body properly oxygenated and healthy.  It is ordered after testing ordered by your healthcare provider and oxygen needs can change depending on activity level—resting, activity and sleep.  There are Durable Medical Equipment companies which provide oxygen.  People can and do travel with supplemental oxygen, working closely with their healthcare provider and airline.  Portable oxygen concentrators are now allowed by FAA on all flights that travel in the United States.

The COPD Support Groups, Hawaii COPD Coalition, the COPD Information Line, your Durable Medical Equipment companies, and your healthcare provider are excellent sources to learn more about supplemental oxygen.  There is also a lot of information available on-line.  Below is just a sample.

Great information about supplemental oxygen, including a very handy chart about various oxygen devices—includes concentrators, liquid oxygen, compressed oxygen, and a wealth of information from a user’s perspective with NO advertising.

Portable Oxygen Concentrators Guide by American Association of Respiratory Care

http://d3vbuoemguibb4.cloudfront.net/portable_oxygen_concentrators_guide.pdf

Portable Oxygen Overview

http://www.portableoxygen.org/overview.html

Portable Oxygen Comparison Chart (periodically updated)

http://www.portableoxygen.org/2pagePOCcomparisonchart.pdf

Adventures of an Oxyphile 1

http://www.pdfgeni.com/text/07c603bbd9

Adventures of an Oxyphile 2 by Tom Petty et al.

*Free Audio Book— in collaboration with American Association of Respiratory Care, 202mb

http://d3vbuoemguibb4.cloudfront.net/oxyphile2.m4b

See more info at:

http://www.yourlunghealth.org/headlines/2012/09/oxyphile_audiobook/

http://www.yourlunghealth.org/headlines/2012/09/oxyphile%5Faudiobook/

http://www.aarc.org/media_center/press_releases/oxyphile_audio.asp

Printed version of Adventures of an Oxyphile 2

http://www.copd-alert.com/OxyPhile2.pdf

Online booklet about travel with oxygen from American College of Chest Physicians.

http://www.accpstorage.org/newOrganization/patients/TravelingwithOxygen.pdf

Blog post from COPD Foundation about portable oxygen concentrators.

http://blog.copdfoundation.org/tag/portable-oxygen-concentrators/

Dr. Tom Petty’s book about Oxygen and Oximeters

http://en.nonin.com/documents/go2/6965-000-01%20Dr%20Petty%20GO2%20Brochure_ENG.pdf

Oxygen-Therapy-from-American-Thoracic-Society

http://patients.thoracic.org/information-series/en/resources/oxygen-therapy.pdf

Oxygen-Therapy-Spanish-from-American-Thoracic-Society

http://patients.thoracic.org/information-series/es/resources/05oxigeno.pdf

ESSENTIALS OF PULMONARY REHABILITATION – Pulmonary Education

By Thomas L. Petty, MD, Mary Burns, R.N, BS and … The Spanish version of the Booklet “Essential of Pulmonary Rehabilitation A “Do It Yourself Program” is for …

http://perf2ndwind.org/Essentials.html

Resources for Patients & Caregivers

SECTION 8 – Surgeries and other Procedures / Techniques

Sometimes, when all other treatments do not provide enough relief, there are some procedures and surgeries that can help reduce breathlessness and/or improve breathing.  These involve reducing the over-inflated portions of the lung through various means and/or lung transplant.  There are various resources on this topic and elsewhere.  These procedures are only performed in specialized medical centers and generally require pre-authorization and the patient meeting many requirements.  Your healthcare provider can provide more information about this.

Surgery for COPD

http://patients.thoracic.org/information-series/en/resources/surgery-for-chronic-obstructive-pulmonary-disease.pdf

Surgery COPD Spanish

http://patients.thoracic.org/information-series/es/resources/11cirugia.pdf

 

Resources for Patients & Caregivers

SECTION 9 – Alternative & Complementary Treatments

Various techniques have been used with different amounts of success to improve breathing through non-medical means.  These include relaxation, acupressure, yoga, supplements, and various other methods.  Work closely with your healthcare provider before attempting any of these methods and keep a diary of how they affect you.

 

SECTION 10 – Advanced Care Directives

Every life eventually runs its full course and comes to an end.  There are resources to help patients and loved ones be sure that wishes are carried out to the extent possible.  Below are just a few of the resources available for consideration and reflection.  It is important to review wishes periodically so that they continue to reflect the beliefs and desires of all involved.

POLST

http://www.polst.org/advance-care-planning/

 

Kokua Mau

http://www.kokuamau.org/

 

Five Wishes

http://www.agingwithdignity.org/five-wishes.php

 

Palliative-Care-from-American-Thoracic-Society-Patient-Information-Series

http://patients.thoracic.org/information-series/en/resources/palliative-care-for-people-with-respiratory-disease-or-critical-illness.pdf

 

Mechanical-Ventilation-from-American-Thoracic-Society-Patient-Information-Series

http://patients.thoracic.org/information-series/en/resources/mechanical-ventilation.pdf

Mechanical-Ventilation-Spanish-from-American-Thoracic-Society-Patient-Information-Series

http://patients.thoracic.org/information-series/es/resources/07ventilacion.pdf

SECTION 11 – Multiple Conditions

Many with COPD have multiple health conditions.  When this occurs, it is especially important to be sure to coordinate care with all healthcare providers, as some medications may conflict with others, increasing or reducing potency.  It is important to fully review ALL your conditions and medications (including those over-the-counter and supplements) at least yearly with all your healthcare providers, as well as whenever you are given a new medication or ordered to stop taking a medication.

 

COPD-Alert’s-Graph-On-Federal-Funding-Differences-Among-Health-Conditions-and-Mortality

http://www.copd-alert.com/files/FUND2012.jpg

 

Flu-information-from American-Thoracic-Society

http://patients.thoracic.org/information-series/en/resources/influenza-the-flu.pdf

 

Air-pollution-from-American-Thoracic-Society

http://patients.thoracic.org/information-series/patient-health/PHSAirPollutionandHealth.pdf

Cough-Information-from-American-Thoracic-Society

http://patients.thoracic.org/information-series/patient-health/PHSCough.pdf

Pulmonary-Hypertension-Information-from-American-Thoracic-Society

http://patients.thoracic.org/information-series/en/resources/pulmonary-hypertension.pdf

Preventing-Lung-Cancer-Information-from-American-Thoracic-Society

http://patients.thoracic.org/information-series/patient-health/PHSPulmonaryRehabilitation.pdf

Staging-Lung-Cancer-Information-from-American-Thoracic-Society

http://patients.thoracic.org/information-series/en/resources/ATSLungCancerStaging.pdf

Sleep-Studies-Information-from-American-Thoracic-Society

http://patients.thoracic.org/information-series/en/resources/sleep-studies.pdf

Obstructive-Sleep-Apnea-Information-from-American-Thoracic-Society

http://patients.thoracic.org/information-series/en/resources/obstructive-sleep-apnea.pdf

COPD-Foundation-Resources-Page

http://www.copdfoundation.org/Resources.aspx

SECTION 12 – Smoking Cessation (Quitting Smoking)

One resource available throughout the US for help in quitting tobacco products is 1-800-Quit-NOW.  They can help the smoker and loved ones who want to support the tobacco user to quit.

In Hawaii, ask to speak to a Hawaii Tobacco QuitLine Quit Coach.  Free patches or gum are available to all adults willing to quit within 30 days of the phone call upon request, while funding lasts.  Below are additional resources helpful for folks who want to quit.  The Hawaii Tobacco QuitLine can also refer to programs in the community with tobacco treatment specialists to help with quitting.

 

Cessation services in Hawaii:

http://hawaii.gov/health/healthylifestyles/tobacco/resources/CleanBreak/CleanBreak.htm

http://hawaiicopd.org/documents/COPD80510MHC_Quit_Smoking_Diary2.pdf

http://hawaiicopd.org/documents/COPD104706MHC_Commit_to_Quit(Spanish).pdf

 

American College of Chest Physicians Tobacco Dependence Toolkit

http://www.chestnet.org/Publications/Other-Publications/Tobacco-Dependence-Toolkit

SECTION 13 – Meetings & Seminars

There are monthly support group meetings on Oahu for COPD.  More information is available at the Events tab of this website, www.hawaiicopd.org.  Additionally, every September there is an annual COPD Education Day at the Queen’s Conference Center.  Details are available in early August.  Please re-register for COPD Education Day on the events page, as space is limited.

Currently, there are COPD Support Groups at Kaiser Honolulu, Pali Momi and additional locations will be announced soon.

SECTION 14 – Other Resources

There are numerous other resources on-line and through the medical centers and insurers.  The quality of resources varies greatly, so be careful to check out the source of your information.  Generally, medical information from government sources, indicated by .gov and large medical centers, professional organizations and non-profit organizations (generally indicated by .org) tends to be more reliable.  Always check with your provider to be sure because he or she knows your condition and you best.

 

COPD Information Line 18663102673 is a toll-free resource staffed by COPD patients and caregivers

http://copddigest.org/read/10/Top+Ten+Questions+from+the+COPD+Information+Line

SECTION 15 – Bibliography

 

Here is a small listing of the many resources related to COPD and chronic disease.  Please email this website if there are additional resources that you would like to recommend be added to this site.  Below are a few additional resource lists.

COPD-Foundation-Resources-Page

http://www.copdfoundation.org/Resources.aspx

http://hawaiicopd.org/documents/Health-Coaching-Resources-Master_10134-09.pdf

http://hawaiicopd.org/documents/Bibliography-from-SCC-MI86603MHC_Reference_List.pdf

 

 

 

Resources for COPD Patients & Caregivers March 10, 2013

Contact Us

Address

Hawaii COPD Coalition
700 Richards Street
Suite 2410
Honolulu, HI 96813

Phone Number

1-808-699-9839

E-mail

hicopd@gmail.com

Post Archives

Donations

Recent Photos

  • hawaii-copd-photo-392
  • hawaii-copd-photo-407
  • hawaii-copd-photo-393
  • hawaii-copd-photo-408
  • hawaii-copd-photo-406
  • hawaii-copd-photo-423
  • hawaii-copd-photo-439
  • hawaii-copd-photo-425
  • hawaii-copd-photo-413
  • hawaii-copd-photo-436

Follow Us:

Email List QR Code: 

sign-up-for-emails-from-hawaii-copd-coalition-qr-code