• Donations
  • PERF Sends Many thanks to Bill and Kathleen Beckley who donated to Tom Petty's Independence Day Fund, John Boynton who made another quarterly donation, Mickey Heumann, and Inogen, Inc developers of the new oxygen concentrator soon to be allowed on airplanes and Kevin & Judy Hettich. We also thank Dr.& Mrs. Elton Chatfield who joined many others, including the Board, in donating to PERF at a musical event held by Barbara Borak in her home in West Covina, CA.

    Jackie Rubinwitch, Ann Wentink and Mary Burns made a donation in memory of their very dear friend and classmate from Hartford Hospital, Genny Smolenski Schaniel. Jeanne Rife made a donation for Iva Lee Douglas. The PERF Board of Directors individually made donations in memory of the mother of Jim Barnett, a fellow member of the Board. Lawrence & Therese Amidei, John & Myrna Powrozek, Bernadette & William Dalenberg, Dorothy Fisher and Constance Lucchese all made donations in memory of Louis Lucchese. Constance Lucchese also made a donation in memory of Camille Kryzwar. 

    Special greetings to Bill Gibson and Marie Cooper.

  • Mark Junge's Victory
  • Do you remember Mark Junge? Mark is the 61 year old man on oxygen 24/7 who decided to bike across the States to show it could be done. Well, he showed us! Mark had a well deserved victory celebration in Times Square, NYC at the successful completion of his historic trek. The achievements of people like this are beyond words and beyond awesome. Mark, we salute you!

  • We Get Mail on Tranquilizers
  • We often get questions about tranquilizers so we thought this letter would be well worth sharing, especially with the upcoming stressful holidays.

    Sherry writes, "Should COPD patients use Xanax? 

    There seems to be a disagreement in our support group. There seems to be a disagreement among our doctors too. Many of us are using Xanax now and have been helped a lot by it. Others say it can be dangerous. The research I've been able to find seems confusing at best. Please help."

    Rehab Improves Sense of Well Being

    The staffs of pulmonary rehab programs often comment on how rehab improves a patient's sense of well being and eliminates panic. We speculate that breathing retraining, learning to pace, and markedly increased exercise tolerance are largely responsible for this marked change. Going along with this is a decreased request for tranquilizers. 

    We asked Dr. Tiep what his advice would be. He responded, 

    "Xanax is a tranquilizer like valium. As such it can be a respiratory depressant. Dr. Richard Light and others studied it for reducing dyspnea in highly dyspneic patients. The results were disappointing - MS [morphine sulfate] is much better. My greatest concern is when patients take it at night and run the risk of respiratory depression. Also, it is very hard to get patients off because of its addicting potential. Originally marketed as being non-addicting, one study showed that patients became addicted in 3.5 days compared to 6 days for valium. The COPD guidelines on Hypnotics and COPD state, "Hypnotics, particularly benzodiazepines, should be avoided, if possible, because of a potential deleterious effect on ventilation, although there is evidence that some hypnotics, such as zolpidem, can be used in less severe COPD without significant adverse effects on gas exchange." 

    Thanks, Dr. Tiep.

    Does this mean no one with COPD should ever take tranquilizers? Of course, not! Let your doctor know if you are suffering from anxiety! Your physician has the whole picture of your medical and family history. That is who should decide if you would benefit from short-term assistance. (And don't forget to ask about a pulmonary rehab program!) 

    NONIN Oximeter

    Oximeters have been the subject of other mail. Jim Frejlach says he got a Nonin at Turner Medical for a total $287.00 without a case. Med-electronics says that their Nonin is $277.00 and you can call them toll free at 1-888-321-1300 for more information. Of course, there is always their website at www.med-electronics.com.  They say they have another brand of oximeter for only $199.00 but we haven't had time to research it. Our apologies also to two other letter writers providing information on these oximeters that we are unable to locate. Who worries about witches while suffering from curse of the 21st Century, computer glitches!

    IMPORTANT ANNOUNCEMENT

    You probably already have this information but it is worth repeating.

    Please be advised that due to an isolated manufacturing issue, GlaxoSmithKline (GSK) has recalled a small number of Advair 'Diskus'100/50 mcg lots. Patients should not discontinue use of Advair, but should check the lot number and get replacements of any products in these particular lots. Lot numbers can be found printed on the label in the center of the "Diskus", on the foil over wrap, and on the box. If patients have any difficulty reading the lot number, they should check with their pharmacist. The following 25 lots of product are potentially affected:

    4ZP2067 
    4ZP2104 
    4ZP2201, 4ZP2216, 4ZP2217, 4ZP2229 
    4ZP2377 
    4ZP2474, 4ZP2475 
    4ZP2619 
    4ZP2759
    4ZP2807 ,
    4ZP2913, 4ZP2901 
    4ZP3041, 4ZP3042 
    4ZP3139 
    4ZP3244, 4ZP3272 
    4ZP3373 
    4ZP3444 
    4ZP3504, 4ZP3550
    4ZP3631, 4ZP3659. 

    Patients who identify that their inhaler is from any of these lots should return it to their pharmacists, and they will be issued a replacement, free of charge. If you require additional information, you can call the GSK customer response center at 1-888-825-5249, Monday-Friday, 8am-8pm Eastern Time.

    World COPD Day is November 17th. 

    See if you can find at least one person to educate about this 4th largest cause of death in the world. I'll bet it won't be hard!

    Miscellanea

    • Did you know (according to the Berkeley Wellness letter of October 2004) that 75 % of the sodium Americans eat comes from processed and fast foods, not from their salt shakers? 1 tsp. of soy sauce has 1030 mg. of sodium. 
    • And did you know that chopsticks are said to be the simplest, most popular hand tool ever invented and that 1.5 billion people use chopsticks daily? Mary will give you her opinion on chopsticks in the next newsletter when she returns from her trip to Japan and China. She has been honored by another invitation to talk to pulmonary patients and health care personnel in Japan. She wanted to send special thanks to Bill Wright and Vlady Rozenbaum for the digital pictures they contributed to help update those she lost when her hard drive crashed. She'll be using some of them during her talks in Japan. Our Japanese friends are eager to learn more, and interact more, with the patient support groups in the United States? They've suggested setting up a meeting someplace between the two countries like Hawaii. Would any of you be interested? Jim Barnett is already talking about organizing another cruise so that his group could participate so the excitement is building. We'll keep you posted and let us know if you are interested in a parley under the palms. 
    • Since Mary won't be back until the middle of November there will be no additional November newsletter. Watch the mail early December for your next Second Wind. Until then, stay well!

  • Do you have a question about respiratory disease that has been bothering you? If so, feel free to write and ask us, either through our web site or by mail. We answer all of your letters.