PERF, The Pulmonary Education and Research Foundation, is a small but vigorous non-profit foundation.  We are dedicated to providing help, and general information for those with chronic respiratory disease through education, research, and information.  This publication is one of the ways we do that.  The Second Wind is not intended to be used for, or relied upon, as specific advice in any given case.  Prior to initiating or changing any course of treatment based on the information you find here, it is essential that you consult with your physician.  We hope you find this newsletter of interest and of help

Very important news!

Rep. Joe Schwarz (R-MI), a physician, has introduced a bill to reverse the oxygen provisions of the, Deficit Reduction Act #S1932.  This new bill is called the "Home Oxygen Patient Protection Act" (H.R. 5513)

As you may know, last minute language was inserted into the Deficit Reduction Act of 2005 (DRA) mandating that Medicare beneficiaries assume ownership of their oxygen equipment after 36 months.  This countdown went into effect January 1 of this year, 2006.  There have been many serious concerns about the financial and safety implications for vulnerable oxygen users as well as about the many ambiguities of this bill.  Advocacy groups and other stakeholders visited Capitol Hill numerous times following the passage of the DRA.  Many emails and letters were sent in efforts to inform the legislators, and their legislative staffs, about this oxygen provision and the many ways it might negatively impact their constituents on oxygen.

On May 25, Congressman and medical doctor Joe Schwarz (R-MI) introduced the Home Oxygen Patient Protection Act, or H.R. 5513.  Co-sponsors include Rep. Tom Price (R-GA), also a physician, Rep. Ralph Regula (R-OH), Rep. Patrick Tiberi (R-OH), Rep. David Hobson (R-OH), and Rep. Tim Ryan (D-OH).

The bill amends part B of title XVIII of the Social Security Act to restore the Medicare treatment of ownership of oxygen equipment to that which was in effect before enactment of the Deficit Reduction Act of 2005.

We hope all homecare providers, patients, and their families as well as their medical teams will support Congressman Joe Schwarz.  We urge you to email him and other Members of Congress, especially your state representatives, to cosponsor and pass this extremely important bill, HR.5513!

Send your emails in today!

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Do you have a copy of this book? 

We highly recommend it!  To order go to http://www2.xlibris.com/bookstore

Frontline Advice for COPD Patients 

 A Book by James T. Good Jr., & Thomas L. Petty
  ISBN: 1-4134-9963-5 (Trade Paperback)
  ISBN: 1-4134-9964-3 (Hardback)
  Pages: 125
  Subject: MEDICAL / Diagnosis

Trade Paperback  $17.84
Hardback  $27.89  Paperback prices reflect 15% discount off retail.  Hardback prices reflect 10% discount off retail.

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 Have you seen EMPHYSEMA/COPD: The JOURNAL OF PATIENT CENTERED CARE?

Volume II, Number 3-4 Summer/Fall 2005 issue reprints the PERF booklet Essentials of Pulmonary Rehabilitation.  A Do It Yourself Guide to Enjoying Life with Chronic Lung Disease written by Dr. Tom Petty, Dr. Brian Tiep and Mary Burns.  For more information about ordering this excellent bi-annual Journal telephone (321) 751-0340.

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Benefits of Pulmonary Rehab

It has been years since we heard from Carolyn Dearen who made Mary’s day by calling lately to say hello.  She reminded Mary of how sick and physically limited she had been when she started rehab, and how much she had improved during the 6-week program.  With justified pride, Carolyn said she had never forgotten the lessons of rehab.  She is very faithful about daily exercise.  Currently she is swimming 40-minute daily laps and walking in an indoor lap area since she lives in hot Sun City, AZ.  Carolyn reports she rarely has an exacerbation (infection) except after a long plane flight.  She generously attributes maintaining her health and exercise regime to what she learned in pulmonary rehab.  How long ago was that?  Twenty-two years ago!  Who says improvements made in pulmonary rehab don’t last?  Not Carolyn!

Carolyn’s testimony about the value of exercise and rehab is a personal confirmation of research presented at the recent CSPR (California Society of Pulmonary Rehabilitation) and ATS (American Thoracic Society) annual meetings in held in San Diego this May.  We will have lots and lots of new information for you in the next Second Wind but briefly, a minimum of thirty minutes of daily exercise such as walking is one of the best things you can do to promote a better life and a longer one.  Pulmonary rehabilitation is what is recommended as the best way to gradually accomplish this increase in exercise tolerance and also to decrease depression and acute exacerbations.

Breathing techniques learned in rehab make exercising easier.  Pursed lip breathing combined with slow respirations, and breathing out longer than breathing in are what you should aim for.  By slow we mean under 16 breaths a minute.  Research shows that even 20 breaths a minute can cause a marked increase in air trapping, which causes increased shortness of breath and feelings of suffocation.  We now have proof for what we have been telling you in rehab for many years.  This is one time when you can’t trust your instincts.  When you feel the most short of breath may be the time you need to stop, and do your best to slow your respiratory rate!  We’ll give you more details on this and other important issues in the next Second Wind.

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Pickle Recipe

This is the pickle recipe by Louise Nett that got Dr. Tom Petty in a pickle…… which you can read all about in his letter on the next page.

Sodium Free Pickles

Soak pickles in cold water for an hour.

Put pickles in clean quart jars (sliced or whole small ones).

Heat 1-cup water and 1-cup vinegar in micro wave till hot.

Add spices.....dill, cumin, bay leaf, Italian mixed spices, whole cloves, garlic, onions etc ( plus sugar or Splenda if you like them sweet).

Pour over pickles......they will be ready to eat tomorrow.

As most of you know, Dr. Petty has had many very serious health problems the past few years.  We get many concerned questions about how he is doing along with requests to let him know that people are thinking of him and praying for him.  When we delivered that message he asked that we publish the following reply.

 “I am moved to know that people care and pray for me. This keeps me going. Give them this message of love.” Tom Petty