Outrageous Lack of Support /Update

I have another blog on arthritis I’m working on, but I had what I thought was an easy answer to a email query to find a support group. Following is my email to her and thought you might be interested.

This is – in part – a post I sent to a person asking me for a respiatory support group in Puyallup and up to 25 miles out of Puyallup.

I’ve spent over 3 hours calling to discover nothing seems to exist. The urls I found were not viable.

The American Lung Association says COPD is now the 3rd leading cause of death in the US but the url to the support group in Puyallup didn’t have a support group. I’m a fan of the American Lung Association but they need to check the urls listed as support groups and keep up-to-date for patients or caregivers looking for help.

WHY don’t patients and their caregivers have access to respiratory/ pulmonary support groups?! All it takes is one room – no cost involved..the group could meet in a park or bus station….anywhere!
*************************************************************.
“The good news first:

I called a cousin in Puyallup (he was born and raised there) about support groups because his wife died of pulmonary fibrosis and I thought he might know of one or more support groups for you.

However, by the time she was finally diagnosed by a pulmonary physician in Puyallup and sent to the U, she was too far along for support groups – had any existed.
My cousin gave me permission to give you or anyone his phone number– he was her caregiver and will answer questions and pass on what he learned as a caregiver.

One thing he learned is how lucky pulmonary patients are to have the University of Washington Medical Center and Dr. Raghu. He and the U’s outstanding medical staff gave his wife stellar care before and after the double lung transplant at the University of Washington. They tried hard to save her.

I gave him your first name and that you might be in touch – let me know if you want his number.

The ‘bad’ news is that I was shocked to discover this morning that I cannot find pulmonary support groups that exist in Puyallup and a 25 miles radius. I have called pulmonary doctor clinics from Tacoma to Olympia, pulmonary rehabs and hospitals. I have found helpful, friendly people but… no respiratory support groups.

I called the Puyallup hospital URL listed by the American Lung Association of Washington as a support group and learned the RRT liaison does not even work there anymore, and no support group exits there either.

I do have online support groups for you including the following:

1. EFFORTS, a support and advocacy group I found online years ago and saved my life with information on what I, as a pulmonary patient, could do to help myself. They are a invaluable source of online information:
(http://www.emphysema.net/Rehab-Support/Support/support.htm,

2. EFFORTS newsletters are the best source of pulmonary information and education I have found anywhere. http://www.emphysema.net/Newsletters.html

3. Sherry Milligan, Associate Executive Director of the American Association for Respiratory Care was very helpful: http://www.yourlunghealth.org
http://www.yourlunghealth.org/finding_care/qrc/pulm_care/index.cfm?state=WA

A ALAW Better Breathers support group is restarting the 20th in Silverdale – if you are interested.

I am sorry but when we consider that COPD (Chronic Obstructive Pulmonary Disease) is the 4th leading cause of death in the US, I am outraged patients and their caregivers have few to no support groups other than online.

Please stay in touch.

Deaths, percent of total deaths, and death rates for the 15 leading causes of death: United States and each State, 1999

A reader wondered why I claimed COPD was the 3^rd leading cause of death in the U.S., then I stated it was the 4^th leading cause a few paragraphs later.

I quoted the American Lung Association (ALA) and the Center for Disease Control.

The Center for Disease Control (CDC) person I spoke with wondered what criteria ALA used for the #3 rating

When I get clarification from the American Lung Association (ALA) #3 –I’ll pass it on.

http://www.cdc.gov/nchs/data/statab/lcwk9.pdf

Table LCWK9. Deaths, percent of total deaths, and death rates for the 15 leading causes of death…

http://www.lungusa.org/site/apps/s/google_search.asp?q=causes+of+death&image.x=0&image.y=0&image=ImageField&entqr=0&sort=date%3AD%3AL%3Ad1&output=xml_no_dtd&c=dvLUK9O0E&ie=ISO-8859-1&client=ala_frontend&b=4567797&ud=1&site=ala&oe=UTF-8&proxystylesheet=ala_frontend

The COPD rate of the 3^rd or 4^th leading cause of death in the U.S. is significant in light of lack of COPD research and patient education.

… Thanks for commenting…