De la mente de Alberto Córdova

Support Groups
La creación de grupos de “apoyo” permite estar interconectados/informados sobre los avances de este padecimiento.
Ellos ya están organizados. Vamos a hacerlo nosotros. Si estas interesado manda tu @
ALBERTO CORDOVA CAYEROS. MEXICO
cordovaboss@yahoo.com.mx

77 años de edad, desde hace 10 años con el diagnostico de Fibrosis Pulmonar. Descubrí que los médicos en el año 2001 pudieron identificar esta enfermedad. Antes de esa fecha la confundían con otros padecimientos pulmonares. Me he dedicado a investigar todo lo relacionado con este padecimiento para compartirlo con otras personas en condiciones similares.
En los Estados Unidos han desarrollado una cultura de “apoyo” que debemos adoptar en México. Mientras mejor informados estemos, sabremos como actuar y luchar mejor por nuestra salud. Apostemos a que los avances médicos nos lleguen a tiempo para disfrutar más años de vida. Transmite esta información a quien la necesite
INFORMACION UTIL PARA LAS PERSONAS CON FIBROSIS PULMONAR

Podemos considerar la posibilidad de integrarse a un grupo de apoyo en:
http//health.groups.yahoo.com/group/pff

Contacte la Pulmonary Fibrosis Foundation, con Jennifer Bulandr, Director of Media and Community Relations at ( 312) 377-6895 para iniciar un grupo de apoyo en su área.
Hay varios sitios en Internet que tienen información sobre Fibrosis Pulmonar. Alguna de la información puede ser valiosa mientras que otra puede no serlo e incluso puede ser engañosa. En su búsqueda usted puede encontrar más información si introduce los términos Enfermedad Pulmonar Intersticial.
The Simmons Center for Interstitial Lung Disease
http://ipf.upmc.com
University of Iowa Health Book
http://www.vh.org
The National Jewish Medical and Research Center
www. Njc.org
Duke University
Este sitio esta dedicado a Fibrosis Pulmonar Idiopática Familiar (Familial Idiopathic Pulmonary Fibrosis) (FIPF. Que es lo mismo que FPI pero en la que esta definida la unidad primaria COMO UNA FAMILIA EN LA QUE 2 O MÁS PERSONAS TIENEN FPI.
http://www.fpf.duke.edu
National Institutes of Health
http://www.nih.gov
The National Library of Medicine
Varias agencias gubernamentales de Estados Unidos tienen bases de datos sobre pruebas clínicas. El NIH a través de la National Library of Medicine ha desarrollado una página web para proporcionar a los pacientes, parientes de los pacientes y médicos con información actualizada sobre investigación clínica.
http://www.clinicaltrials.gov
The National Home Oxygen Patients Association fue establecida al final de la década de los 1990 para darles a los usuarios de oxígeno la información necesaria para que puedan llevar vidas productivas.
http://www.homeoxygen.org
Traveling with Oxygen
http://www.breathingeasy.com
En español usted puede consultar en:
http://www.iner.gob.mx
moiselman@salud.gob.mx

American Lung Association
61 Broadway, 6th Floor
New York, NY 10006
800.LUNGUSA
Coalition for Pulmonary Fibrosis
Suite F, #227
1659 Branham Lane
San Jose, CA 95118-5226
888.222.8541
Pulmonary Fibrosis Foundation
P.O. Box 75004
Seattle, WA 98125-0004
206.781.5680
The Pulmonary Paper
P.O. Box 877
Ormond Beach, FL 32175
800.950.3698
LECTURA RECOMENDADA
La siguiente información se ofrecen libros sobre los trastornos de pulmón,
y están disponibles a través de la mayoría de las principales librerías en línea:
• El Sourcebook trastornos de la respiración, por FV Adams, MD
• Falta de aliento: una guía para vivir mejor y la respiración, por AL
Ries,
• El Manual de trasplante de pulmón, por KA Coulture
• Hacer frente a prednisona, por E. Zukerman y JR Ingelfinger, MD
Sourcebook • El paciente Oficial en fibrosis pulmonar idiopática,
por JN Parker & P. Parker
• Compartir el cuidado: ¿Cómo organizar un grupo para cuidar a alguien que
Está gravemente enfermo, por C. Capossela & S. Warnock
Vuelo • Tomar – Inspirational Stories of Lung Transplantation,
Compilado por Joanne Schum, escrito por los beneficiarios de pulmón en todo el
mundo
• Aventuras de un Oxy-phile, de Thomas L. Petty, MD

ALBERTO CORDOVA CAYEROS
cordovaboss@yahoo.com.mx

Online Support Groups
The Pulmonary Fibrosis Foundation’s online support group may be accessed by
clicking on http://health.groups.yahoo.com/group/Breathe-Support/. This group is for pulmonary fibrosis patients.
A caregiver’s online support group is also available: http://health.groups.yahoo.com/group/Breathe-SupportCaregivers/ This group is for people who take care of and support the people who have pulmonary fibrosis.
An family online support group for the family members of a patient is now available: http://health.groups.yahoo.com/group/Breathe-SupportFamily/ This group is for the family members of a patient.
Lung transplant. Should I or shouldn’t I? Check out our newly formed online support group for Lung Transplant patients before and after. This forum will be for people trying to decide whether or not to have a transplant but also for people who have had a transplant and can share their story with those who are waiting or deciding. Here’s the link: http://health.groups.yahoo.com/group/Breathe-SupportLungTransplant/.
If your loved one passed away from pulmonary fibrosis and you would like to «talk» to someone, you can connect with people on our grief board: http://health.groups.yahoo.com/group/Breathe-SupportGrief/.
UK on-line support groups providing support and information for people suffering from pulmonary fibrosis primarily in the UK but anyone can participate. This site is for patients, carers and people who have lost a loved one to pf: http://health.groups.yahoo.com/group/pulmonaryfibrosis & http://www.pulmonaryfibrosis.org.uk
India on-line support group providing support to patients and their families in India who are dealing with pulmonary fibrosis: http://health.groups.yahoo.com/group/PF_Support_Group_India
________________________________________

Scottsdale, AZ
Pulmonary Fibrosis Support Group
Location: Via Linda Senior Center, 10440 E. Via Linda, (480) 312-5810
Meetings: Last Saturday of the month
Contact information: Lillian (480) 219-6260 -Home (480) 570-9929 -Cell

Rancho Mirage, CA
Better Breathers Club
Location: Eisenhower Medical Center, 3900 Bob Hope Dr.
Meetings: Third Wednesday of the month 12pm-1pm
Contact information: Julia Dugan, RN, RT 760-773-2031
This club is for IPF patients only.

Sacramento , CA
Central Valley Pulmonary Fibrosis Support Group
Location: Sutter Cancer Center, 2800 L St., First Floor, Classroom 1 or 2
Meetings: 3rd Monday of the month (call for confirmation) 1:30 – 3:30 PM
Contact information: Sandra Rock (916) 354-1324

Victorville, CA
Pulmonary Fibrosis Support Group
Location: Charitable Foundation
16716 Bear Valley Road
Meetings: 1st Wednesday of every month, 3:00 – 4:30 PM
Contact information: Steve Clemmons (760) 246-7711

Denver, CO
Pulmonary Fibrosis support group
Location: National Jewish Medical and Research Center
1400 Jackson Street, Denver
Meetings: Every other month
Contact information: Carol Bair, RCP, (800) 423-8891 x 1621

Wheatridge, CO
Pulmonary Fibrosis Support Group
Location: Exempla Lutheran Rehabilitation Center
9830 I-70 Frontage Road South
Conference Room
Meetings: Last Tuesday of the month 2:00pm – 3:30pm
Contact information: Brenda Crowe, CRTT 303-467-4133 or Phil Konsella 303-526-0541 or 303-324-7679

Dover, DE
Pulmonary Hypertension / Pulmonary Fibrosis Support Group
Location: Kent Pulmonary, 938 Bradford Street
Meetings: 2nd Tuesday of every month, 6:30 PM
Meeting information line: 302-328-3107 option 3

Newark, DE
Pulmonary Hypertension / Pulmonary Fibrosis Support Group
Location: Christiana Care Hospital, 4755 Ogletown-Stanton Road
Meetings: 3rd Tuesday of every month, 6:30 PM
Meeting information line: 302-328-3107 option 3

Fort Myers, FL
Pulmonary Fibrosis support group
Location: HealthPark Medical Center, Room 2A
9470 HealthPark Circle, South Ft. Myer
Meetings: Second Friday of the month – 1:00 PM
Contact information: Marge (239) 481-0582 or Dana (239) 335-7720

West Palm Beach, FL
American Lung Association of SE Florida PF Support Groups/Lectures
Location: Good Samaritan Medical Center, 1309 N. Flagler Drive, Teleconference room
Meeting: Times Vary
Contact information: Mary Shields (561) 659-7644 (please call for reservations)

Chicago and Suburbs, IL
The Breakfast Club, Pulmonary Fibrosis Support Group
Meetings: 4th Saturday of the month – 10:00 AM
Location: Elmhurst Memorial Center for health
Contact: Leanne Storch 312-587-9272 RSVP, please
This meeting is open to Pulmonary Fibrosis patients and their families and friends.

Joliet, IL
Pulmonary Support Group
Meetings: 2nd Thursday of the month – 10:00 am – 11:00 am
Location: Silver Cross Hospital, Specialty Care Pavilion, 1300 Copperfield Avenue
Call: 888-660-4325
This support group is for individuals with pulmonary fibrosis, sarcoidosis, emphysema, chronic bronchitis, COPD & adult asthma

Naperville, IL
Pulmonary Fibrosis Support Group
Meetings: Thursday 10-11:30 AM – 1st Thursday of each month.
Location: Edward Hospital, 801 S. Washington Street, Naperville, IL
Contact: Donna Serlin, BS, RRT at Edward Hospital Pulmonary Rehab
630-527-3389 for more information and directions to meeting space

Pittsfield, MA
IPF Support Group of The Berkshires
Berkshire Medical Center, Pittsfield, MA
Private Dining Room B Ground Floor
Contact: Dolores Eckert at 413-243-1797 or email: doleckert@msn.com or Butch at 413-698-3195
or cfezzie1@berkshire.rr.com for meeting dates and times

Baltimore, MD
Bay Bridge Breathers
Harbor Hospital’s LifeResource Center 2990 S. Hanover St.
Meetings: Monday – noon
For those with emphysema, chronic bronchitis and pulmonary fibrosis.
Contact: 410-350-8255 for specific meeting dates

Ann Arbor, MI
Quest for Breath Support Group
The University of Michigan Pulmonary Rehabilitation Program
250 W. Eisenhower Parkway, Ann Arbor, Michigan 48103
Meetings: 10am-12pm on the second Saturday of each month
Contact: Julie Hyzy, MSW, Facilitator at: 734-657-6605 Email: Juliehyz@med.umich.edu

Sterling Heights, MI
Support Group
Presbyterian Church of Utica, 11300 Nineteenth Mile Rd., Sterling Heights, MI 48314
Meetings: 2nd Tuesday of each month: 1:00 to 3:00 PM
Contact: Darlene S. Watkins, RRT 586-573-5763 Email: darlene.watkins@stjohn.org

Cary, NC
Pulmonary Fibrosis Support Group
Meeting: 1st meeting will be Saturday, July 18th @ 10 am
Meetings will be held every third Saturday thereafter
Location: Good Hope Church, 6628 Good Hope Church Road
Contact: Carmen – 919-461-7122 if no answer please leave message

Morristown, NJ
North\Central Jersey PF Support Group
Location: Morristown Hospital, 100 Madison Avenue, Conference Room 3 «B» Level
Meetings: Last Wednesday of every month, 7:00 PM
Contact information: Barbara Murphy – bjmurphy21@comcast.net

Sleepy Hollow, NY
Pulmonary Fibrosis Support Group
Location: Phelps Memorial Hospital, Pulmonary Gym- B-Level
Meetings: 12:00PM – 1st meeting November 10th, 2009 then every other month thereafter
Contact information: Susan DiFabio – 914-366-3712 sdifabio@stellarishealth.org
Reservations Required

Tulsa, OK
IPF Support Group
Location: St. John Health Plaza
1819 East 19th Street, 1st Floor
Meetings: 3rd Saturday during March, May, July, September and November
Contact information: Leon Simmons, ipftulsa@tulsaconnect.com

Eugene, OR
Spirited Breathers support group for PF patients & families
Location: Sacred Heart Medical Center, Oregon Heart Center conference room
1255 Hilyard Street, Eugene
Meetings: Second Thursday of the month, quarterly meetings 3:00 – 4:30 PM
Contact information: Susan: (541) 686-7442

Tualatin, OR
Pulmonary Fibrosis Support Group
Location: Legacy Meridian Park Hospital, Community Health Educational Building
19300 SW 65th Avenue
Meetings: 1st Thursday of the month, 3:00 – 4:30 PM
Contact information: Karen Saveride: (503) 692-2158

Pittsburgh, PA
IPF support group
Location: UPMC Presbyterian
Conference Room 1102, 11th floor
Meetings: First Monday of every other month excluding January, July and August, 1:00 – 3:00 PM
Contact information: (412) 802-3275, sirnmonslLD@msx.uprnc.edu

Chattanooga, TN
Alliance for Pulmonary Fibrosis
Location: Diaganostic Center Building
2205 McCalle, Conference Room A, 1st Floor
Meetings: 3rd Tuesday of every other month from 5:30-7:00pm
(October 20th, December 15th, February 16th, April 20th, June 15th)
Please RSVP Monday before to: Becky Black 423-645-4912
or Heather Lacy 423-697-6177

Nashville, TN
Middle Tennessee Support Group
Location: Vanderbilt Clinic Conference rooms – 2702 and 2703
Meetings: Second Monday of the month, (July’s meeting will be the third Monday) 12:00 noon
Speakers will provide educational information and lunch is usually provided
Contact: Wendi – (615) 322-2386
Website: http://www.mc.vanderbilt.edu/root/vumc.php?site=ipfcenter

Houston, TX
Pulmonary Fibrosis support group
Location: Kelsey Seybold Main Campus
2727 W. Holcombe Boulevard, 2nd Floor imaging conference room, Houston
Meetings: Every third Saturday, every other month.
Contact information: Jan Orndorff: (281) 348-2378 (281) 844-5300 (cell) or Jan3145@aol.com

Falls Church, VA
Location: Inova Fairfax Hospital, 3300 Gallows Road, Conference Center, Room 5
Meetings: Varies
Contact information: Jane Harrison: (703) 776-3203, jane.harrison@inova.com

Everett, WA
Pulmonary Fibrosis Support Group – Lung Rangers
Location: Medical Office Building -1330 Rockefeller – Rainer Room – Ground Floor
Meetings: Third Tuesday of the month, 4:00 – 5:30 PM
For information call: (425) 261-3780

Seattle, WA
Pulmonary Fibrosis support group (in existence for 15 years!)
Location: American Lung Association of Washington
2525 Third Avenue (downtown Seattle between Cedar and Vine)
Meetings: Second Tuesday of every month (except July-August), 1:00 – 3:00 PM
Contact information: (206) 441-5100

Milwaukee, WI
Milwaukee Breath Scroungers (MBS) – Pulmonary Fibrosis Support Group
Meetings: 2nd Thursday of each month, 1:30 PM – 3:30 PM
Contact Sheri Baldikowski, President, for location and information @ 414-313-4698

North Staffordshire, UK — FIRST BREATH OF LIFE FOR CHEST ILLNESS GROUP
A Support group for North Staffordshire people with chest illnesses and their caregivers was launched last night as a memorial to a businessman who died from a rare breathing condition. The Breathe Easy Club held its first meeting at Hanley’s Dudson Centre following months of preparation work by Pat Shaw, the widow of 64-year-old John Shaw who ran the family stationers in March Street, Hanley. She has already formed a steering group of two hospital chest specialists, two GPs, and nurses to run the group which will meet on the first Monday of every month. Following her husband’s death, while he was awaiting a lung transplant, she vowed to set up a support group in the Potteries in his memory. Mr. Shaw, of Hill Chorlton, Newcastle, died two years after contracting the virus behind pulmonary fibrosis, which stops oxygen getting into the lungs.

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Additional Support Groups

If you know of any additional support groups that are not listed above or would like to participate in the formation of a new group, please email: pulmonaryfibrosisinfo@yahoo.com

Pulmonary Fibrosis Foundation
1332 North Halsted Street Suite 201
Chicago, Illinois 60642-2642
(312) 587-9272 fax (312) 587- 9273

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Description

Welcome to the Pulmonary Fibrosis Foundation’s most active on-line support group for patients. We’re here to support one another as we learn from each other about idiopathic pulmonary fibrosis (IPF) and pulmonary fibrosis (PF). This will be a safe environment where patients can share stories, concerns, fears, etc. about IPF and PF.

This is your support group. Your thoughts and suggestions are important and beneficial to the group. Please feel free to allow this to be a space where you can gain insight from each other about this disease that takes your breath away. Remember it is a public forum and respect for each other is most important.

Any information shared on this site should not be used as medical advice.

The Pulmonary Fibrosis Foundation’s mission is to find a cure and raise awareness of pulmonary fibrosis. We are devoted to improving the quality of life for those diagnosed with pulmonary fibrosis. The Foundation provides hope and inspiration for patients through education, advocacy and funding for clinical research.

If you would like to receive more information about pulmonary fibrosis, please contact us by e-mail at pulmonaryfibrosisinfo@yahoo.com or phone 312.587.9272.

An on-line support group was just started July 2006 for the people who are the primary support of patients with pulmonary fibrosis. You can check it out at: http://health.groups.yahoo.com/group/Breathe-SupportCaregivers/. We’ve added a third support group for people who have lost a loved one to pulmonary fibrosis. The link is: http://health.groups.yahoo.com/group/Breathe-SupportGrief/.

Mary Beth Murtha – Moderator

Leanne Storch
Owner Breathe-Support Groups
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ALBERTO CORDOVA CAYEROS
cordovaboss@yahoo.com.mx