American Association Of Respiratory
Care This is a must see site
for anyone who wants to stay updated on what's happening in the field of
respiratory care. This site includes ongoing political issues, respiratory
care, from the caregiver level to the research stage. It also includes
a link to all state respiratory organizations and ongoing projects within
each state. It includes testing sites to determine your weak areas that
you need to work on to manage your own care.
Cheshire
Medical Center
Cheshire
Medical is the home of Chronic Lung Disease (CLD) Forum. There is lots
of information about COPD, as well as other pulmonary disorders. There
is also a link to their medications page here.
The COPD page includes a "slide show" and ways of coping with
COPD. Finally there are links to other helpful sites. Our hats off to this
fine resource on the web!
Colorado Health
Net
This is a must site if you
are new to COPD. Has many definitions and links to other sites.
This site is a great source
of information and features the Patient Education Empowerment Program (PEEP).
Especially valuable are details involving definitions, symptoms,
and medications.
There is a section on breathing exercises and physical reconditioning as
well as excellent guidelines for staying healthy. This is a great web site.
Mt Sinai
Medical Center (Cleveland)
There is a lot
of information on this site, with an emphasis on several in-depth and on-line
articles. Interested in an extensive discussion concerning the
history
of Oxygen therapy? Similarly there is a full article concerning arterial
blood gases. Well worth a visit.
This is arguably the finest research
web site for medical information on the internet. Until June of 1997 it
was available only through subscription. Now it is free. Enjoy.
This site was developed
and is maintained by Sandi Woods. It is by far one of the best quick references
for determining the meaning of words and phrases pertaining to COPD and
other pulmonary diseases.
The Alpha1 National Assoc. started with a small local support group in
Minnesota and has grown to represent the Alpha community grandly. With
several thousand active members it is the most influential Alpha1 organization
in the world.
Alpha To Alpha
This independent support site has information about alpha1, the alpha1
international e-mail list and the alpha1 liver e-mail list. You'll find
Alpha1 chat, discussion forum/bulletin boards, online "alpha atlas," a
photo album and more.
As their site states "Over 15,000 physicians are members of this unique
international multidisciplinary society dedicated to the advancement of
research, teaching, and the clinical practice of cardiopulmonary medicine,
surgery and critical care."
The ALA is the largest lung association in the United States. Its interests
are far wider than just COPD and Emphysema - as well they should be. They
are a major force in trying to reduce smoking, and the influence of the
tobacco industry, in the US. Our link points at their Emphysema page
Be sure to check their physician's side of the Association - the American
Thoracic Society Medical
TrendsSister site of Tendances Médicales,
a French speaking site which is relatively new but making great progress
in providing information concerning all medical and medical related web
sites and pages. They provide a number of services including a search
engine of sites, pages and conditions. Recognizing that they don't
know or have everything they even sport a page of related search engines.
They also publish a weekly email newsletter. Worth the visit to browse
around.
This is the Federal agency responsible for health care in the United States.
An important organization that helps to foster research and government
health care policy.
This site is a must for all pulmonary patients.
It covers all areas of respiratory care from computerized self testing
and evaluation of respiratory diseases to care and education. Also includes
a link to identify state licensing agencies and procedures for verification
of credentials for respiratory care professionals.
Pulmonary Education
and Research Foundation (PERF)Their
literature says that they are a small but vigorous non-profit foundation
dedicated to providing help for those with chronic respiratory disease
through education, research, and information. What they do not say
in this publicity header is that their web site is written in such a manner
that the average individual will understand what they are talking about
and that they have professional pulmonary doctors and nurses on the board
of directors. This foundation also publishes a newsletter of interesting
and informative pulmonary information called
Second Wind (Not to
be confused with the Second Wind Lung Transplant Association).
Patient Support
Alpha1 SupportAlpha
1 provides many functions for the individuals affected with this "brand"
of lung disease.
Alpha1 U.K Support Mailing List
forAnother mailing list for folks with Alpha-1
variant of emphysema - this one is for people in the United Kingdom.
Better Breathers
We don't know of a general Better Breathers web site, but this is an organization
that we should all be aware of. Your local health care people can help
find one near you. It is an excellent way to share burdens and victories
face to face and to be actively involved with managing this disease. The
emphasis here is on Asthma.
This is part of the Cheshire site (see our Best of the Internet). Not limited
to COPD matters, it attracts both patients and professionals interested
in, or suffering from, Chronic Lung Diseases.
The Lung Transplant Association runs both a web site and internet mailing
list. This is an important list for anyone interested in the subjects of
lung transplantation or lung volume reduction surgery.
Not associated with COPD, this is a web site for finding whatever else
interests, or ails, you!
Smoking Cessation
SmokeNoMore Program
The
web home for our own SmokeNoMore Program
compiled by our long time member, Olivija Gwynne. The site is chock full
of information, tips, and hints to help those on their quest to a smoke-free
life.
Another paper by Bill Horden, with his ideas concerning a more standardized
approach for judging and organizing pulmonary rehab/wellness programs.
This page continues to grow in its depth and breadth, and is a wonderful
patient resource.
Ron
Peterson's Web Site. Exercise is the main topic of this web
site by Ron Peterson. He was diagnosed with emphysema in
1987, stopped smoking in 1995 and has been exercising daily ever since.
Included in the web site are stories about exercise that have appeared
in journals written by Peterson and others, yoga exercises by the late
Janet Kolish, exercise data on Peterson and a "What's New" section of varied
topics on lung disease.
One of the fundamental medical texts, along with The Physicians Desk Reference
(PDR), the Merck Manual provides basic medical information. The site features
a searchable index.
Run by the University of Iowa, this is an excellent research tool for basic
information regarding many medical subjects. Best if used with their search
tool.
This website is a must for people with special diets requirements such
as COPD, emphysema, lung transplants, diabetes, coronary problems and many
other special dietary requirements. It also has printout recipes, bulletin
boards and chats for exchanging dietary ideas and a multitude of other
things of interest to the culinary experts.
Treatment
Drugs /
Pharmaceuticals
https://www.rxlist.com/
Use
this site to search for references to drugs in other articles
on the web. It lists the top 200 meds in alphabetical order, their usage,
normal doses, interactions, generic and alternate brand names, prices and
ordering information. In addition, it has a link to a doctor and pharmacist
on line. .
This site features a vast array of information about prescription and general
medical information. It is kept quite up to date. Of particular interest
is the Tradename
Data Base
The Health Care Financing Administration (HCFA), is the federal agency
that administers Medicare, Medicaid and the State Children's Health Insurance
Program (SCHIP). This site is very detailed and provides search engines
for researching the specific topic in which you may be interested.
The Center for Medicare Advocacy, Inc. is a private, non-profit organization
which provides education, advocacy, and legal
assistance to help elders and people with disabilities obtain necessary
healthcare. We focus on the needs of Medicare
beneficiaries, people with chronic conditions, and those in need of
long-term care. The organization is involved in education, training
and litigation activities of importance to Medicare beneficiaries nationwide.
The service is free in Connecticut and for a fee for others.
Nonin manufactures oximeters, large and small. Their finger tip unit (yes,
the entire unit fits on your finger) is simply amazing. They don't sell
directly to the public but will sell to your doctor or health care provider.
HEPA air filters are able to remove many of the air-borne causes of pulmonary
irritation. This page features several units suitable for cleansing one
or more rooms. Also worth investigating are whole-house units which become
part of the central heating/cooling system.
Lung
Volume Reduction Surgeryand
Transplantation
Lung Volume Reduction
LVRS is a technique in which parts of the emphysemous lung are surgically
removed. While this may sound strange, even cruel, it should first be understood
that the parts removed are areas of the lung that are no longer functioning.
This non-functioning lung fills areas of the rib cage (our lungs' "case"),
thereby leaving less room for normal lung breathing movements. Once the
diseased lung is removed the remaining, functioning, lung can more easily
and completely expand and contract, increasing overall lung function. This
technique has been quite successful for some. But be aware that not every
COPD patient is a candidate for this surgery.
One location that is actively involved in LVRS (and transplantation) is
The
Chapman Lung Center in Southern California.
Lung (and Lung/Heart) Transplantation
Transplantation is a consideration for many COPD patients. It offers
the opportunity to "trade in" our very-poorly functioning lungs (and perhaps
equally overtaxed hearts) for new donor organs. Transplantation of lungs
and lungs/heart is still among the newer forms of organ transplant, and
thus its success rate is still not as great as some longer-practiced surgeries.
Post-transplant complications from infection are a threat as is the ever-present
danger of organ rejection. All of that aside, transplantation is a definite
consideration for people with end-stage disease.
Web sites with information about transplantation include:
Providers Lincareis a provider
for oxygen therapy. This is a nice site, with useful information for COPD
patients.
Disabled Equipment and Traveling
Disability and Medical
Resource Mall This site covers any and everything to do with disabled and equipment
rentals, purchases, and travel. There are companies at this site that cover
everything from preprinted emergency medical forms to prearranged travel
tours for the disabled. This site is a most complete one for the necessities
and pleasures of the disabled.
Liberty Medical Manufactures concentrators and converters that can be used in automobiles
or Recreational Vehicles. They also manufacture emergency oxygen supply
systems and hand held oximeters. Well worth checking into if you need a
mobile concentrator for travel or additional mobility.
