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The Pulmonary Paper Volume 10 No 8 Claiming Medical Costs Oxygen user Pete Wilson of Virginia advises our readers that the cost of electricity to operate your oxygen concentrator may be a medical deduction. Check with whoever prepares your annual income tax return if you can or would benefit from taking this deduction. This "hidden" cost of oxygen is very real to users. To compute the cost, do the following:
You may want to investigate the possibilities of deducting the cost of the oximeter as part of your medical expenses. Many readers have also received reimbursement from their insurance companies for the cost of their oximeters. A sample letter your physician may write to your insurance company to justify the purchase of an oximeter is available at the EFFORTS site: http://www.emphysema. net/oxiletter.html Those without access to a computer, may send a stamped, self-addressed envelope to the Pulmonary Paper, PO Box 877, Ormond Beach, FL 32175 to receive the sample letter. Joanne Buchanan of Needham. MA ordered a finger tip Nonin oximeter for $379 without a prescription from a company that specializes in medical technology for pilots, Aeromedix. The only difference in this one and the one sold by medical dealerships is the name stamped at the top "Nonin" or "Sport." (This was told to us by the manufacturer.) Because they do not require a prescription, they are unable to make medical claims associated with use of their oximeter. To order, visit http://www. aeromedix.com/products/pulseox/pulseox.html or call 24-hour toll-free order line 1-888-362-7123. Joanne also ordered a storage case for her oximeter for $18. Shipping costs were $6.95. The Pulmonary Paper Volume 10 No 7 Your Beating Heart In honor of Valentine’s Day, Mark Mangus RRT, Head of EFFORTS Medical Board of Directors, explains how your lungs may affect your heart.Swelling in your ankles is the result of a combination of sluggish circulation, salt balance between blood and tissues and how much protein is in the blood, relative to how fast the blood is flowing. It is also made worse by steroids, medication which many people with COPD use. The sluggish circulation is the result of your heart failing to efficiently pump your blood. The right side of the heart weakens and fails after trying to pump against high resistance of the lungs’ circulation. That resistance is increased due to constriction of the blood vessels - as happens when the blood oxygen level falls below 90% - or from loss/destruction of pulmonary blood vessels, which is part of the destructive process of emphysema. It usually accompanies more advanced COPD. Right sided heart failure is called cor pulmonale. The left side of the heart loses its ability to adequately pump blood out into the body and blood backs up as a result. This congestive heart failure is most often seen in cardiac disease. Because blood is moving throughout the body at a slower speed and the forces of water pressure, protein- and salt-attraction are thrown off normal balance, water leaks out into the space between the blood vessels, surrounding tissues and cells. The cells, take on extra water, but by far the fluid moves to areas that are neither within the circulatory structures nor the cells. We call it the ‘third’ space. Because this fluid is not contained or confined, it can relocate throughout the body according to forces of gravity. That is how it ends up down in your ankles and also why we tell you to elevate your feet/legs to coax the fluid to your upper body where it has a better chance to be eliminated/excreted. An additional problem of ‘where’ the fluid can go is that it frequently collects in the area around the lungs and heart, making it hard to breathe against the weight and pressure of the fluid. The problem is that no matter where the fluid goes, without improvement in the balance of water force, salt, protein and most importantly, pumping of the blood, the fluid remains in the third space negatively influencing many things. Treatment is directed at correcting the balances of salts, water force and protein and pumping action of the heart. The easiest to influence is the water force, so you are prescribed medications like Lasix (Furosemide) and other diuretics. They simply make your body shift that fluid away from the third space and back into circulation to your kidneys where it is processed and eliminated. If salts remain out of balance, you are given replacements, most familiar is Potassium. You are also encouraged to control/restrict your intake of Sodium and Chloride. The trickiest and least inviting treatment approach is to try to directly alter the heart’s ability to pump. Be sure to follow your doctor’s care plan with regard to watching intake of fluid and salts. Take your diuretic medications and Potassium supplements as prescribed. Use sufficient oxygen to keep that influence on pulmonary blood vessel constriction minimized! Mobility is felt to help move the fluid to where it can be more easily eliminated. I recommend moving as best you can, as long as you are well oxygenated! Ultimately, compliance with your prescribed plan of fluid management and communication with your doctor are the best way to find control of fluid buildup. It is impossible to effectively adjust your therapy if you don’t know what works and what doesn’t. The Pulmonary Paper Volume 10 No 6 Vanceril Recall Five batches of Vanceril are being recalled by the manufacturer because some canisters may not contain active drug. Schering-Plough Corp. warned that the recall "should be considered very serious´´ because patients using a defective inhaler could be left more vulnerable to asthma attacks. Patients cannot tell if they have a defective canister by looking, because the inhaler may appear to emit an aerosol spray even if that spray does not contain active drug, Schering said. Recalled are five lots of "Vanceril 84 mcg double strength inhalation aerosol convenience packs." The lot numbers are: 9-DMT-157, 9-DMT-158, 9-DMT-160, 9-DMT-161 and 9-DMT-163. They were distributed in November and have an expiration date of July 2000. Patients can check the top or bottom flaps of the package and the canister label for the lot numbers and expiration date to see if they have any of the recalled canisters. You may return recalled inhalers to the drugstore of purchase for a free replacement, and may call 1-800-621-9760 for more information. Young COPDers Are you below the age of 40 and suffering from emphysema? If so, you might be feeling as confused and overwhelmed as I was. I’m 35 years old and am in the early stages of COPD. It’s my hope that this article will help to inform you by providing you with a personal perspective.First, it is very important that you speak with your doctor about your particular diagnosis since emphysema doesn’t usually occur in people our age. If you suffer moderate to severe COPD symptoms, your illness may be due to an inherited deficiency or malfunction of a chemical (protein) found in the bloodstream called alpha 1-antitrypsin. This condition is diagnosed after testing for the deficiency and requires alpha1 replacement therapy and special medication. On the other hand, if you have a history of smoking and, like me, you suffer milder symptoms (shortness of breath during or after exercising, frequently feeling tired or sluggish - but not excessively so), you more than likely have been diagnosed early and/or "by accident".In my case, I began suffering chest pains over the summer. Smoking was no longer a pleasure and very often I’d stub out a half-smoked cigarette because it hurt my chest. I had no energy and woke up every morning feeling light-headed and suffering a sore throat. Aerobic exercise became more difficult to do due to shortness of breath (SOB). I started cutting down on the cigarettes but still felt lousy. Finally, I paid a visit to my HMO. My regular physician was not available, so I met with a Registered Nurse Practitioner who listened to my chest and my symptoms before suggesting that perhaps I was feeling stress and this was causing inflammation of my inner chest wall. I was told to take 6 tablets of 200 mg. Ibuprofin per day for two weeks, and to make an appointment for a chest x-ray if the symptoms still persisted after that time. The pain not only lasted, it worsened, and two and a half weeks later I went back to my HMO. The resulting x-ray indicated hyperinflated lungs due to emphysema. Within a month I had taken my spirometry test and received the good news that my lungs were only 2% obstructed and that I am in the early stages of COPD/Emphysema. Passing my FEV 1 test with flying colors does not mean I am out of the woods, however. I was told that I can suddenly take a turn for the worse at any time, and that the chances of this happening are even greater if I continue smoking or catch pneumonia. Therefore, I immediately quit smoking that very day – cold turkey – and have scheduled an appointment with my physician to discuss flu and pneumonia shots. I am also exercising regularly again, using Pursed Lip Breathing to maintain my breathing.Another step I took, just as important as the others, was to join a support group for sufferers of emphysema: EFFORTS. With the help of my new family members, I am constantly gaining insight and information as to the effects of our disease, as well as finding new ways of coping. I am also taking advantage of the fact that I’ve still got enough energy to take on more of an activist role for EFFORTS and am busy writing letters and educating myself and others about our illness and our group. This has not only helped me accept the fact that I have an incurable and deadly disease, it has brought me new friends and a new way of looking at life. I strongly urge you younger folks to take advantage of your early diagnoses by taking steps now to ensure a longer, more comfortable future. We were fortunate to have been handed a gift from above. Let’s not waste it. Lis Baumann
The Pulmonary Paper Volume 10 No 5 ATRA Centers Named! A study done in 1997 with lab animals by Drs. Donald and Gloria Massaro of Georgetown University raised the possibility that emphysema could be reversed with the use of a derivitive of Vitamin A - All-Trans-Retinoic-Acid (ATRA.) In 1998, researchers at UCLA began conducting a study on humans. (http://www.med.ucla.edu/EduMatrls/atra.htm) And now, the official news from Craig Miron, Contracting Officer of the National Heart, Lung and Blood Institute goes like this: "The objective of the "Feasibility Studies on Retinoid Treatment of Emphysema" Program is to conduct preliminary studies to determine whether conducting a larger, controlled, clinical trial on the efficacy of retinoic acid therapy in the management of emphysema is possible and indicated. Specific goals with this program are to identify which patient populations, which drugs and dosing schedules, and which outcome measures should be used if a larger study were indicated." "Five clinical centers were awarded contracts under this program. We have listed the names of the principal investigators, and the names and telephone numbers of the person at each center to call if you are interested in more information about the program at that center." Mr Miron also writes, "You are welcome to call any of the centers for more information. Most of the centers will be taking names and contact information in anticipation of starting their studies. Since the investigators must still write and get approval from their institutions on the final protocols, it is unlikely that any center will start recruiting patients before April/May 2000. The five participating centers: Michael D Roth MD Department of Medicine Division of Pulmonary & Critical Care UCLA School of Medicine 10833 LeConte Avenue Los Angeles, CA 90095-1690 Contact: Carlena Leuffroy (310) 825-0759 Each time we called this number, we got an answering machine requesting to leave a message that would be returned. Frank Sciurba MD Associate Professor of Medicine Division of Pulmonary, Allergy and Critical Care Medicine 1117 Kaufmann Building Pittsburg, PA 15261 Contact: Betsy George (412) 648-6388 (Press 2 for ATRA Study, Press 1 for NETT Study) We reached an answering machine that instructed us to leave our name, address and date of birth. You find out that the study is in the early stages of organization with the actual trial predicted to begin in March of 2000. Neil W Schluger MD Chief, Clinical Pulmonary Medicine Columbia University Dept of Medicine 630 West 168th St New York, NY 10032 Contact: Patricia Jellen RN (212) 305-1158 Spoke to a very nice lady that takes your name, and address to mail out information in November. George T O'Connor MD Pulmonary Center Boston University Medical Campus 715 Albany St R304 Boston, MA 02118 Contact: Laura Agreda (617) 638-4470 I was asked my name and phone number and was told that the doctor would call me back. Joe W Ramsdell MD University of California San Diego Medical Center 200 West Arbor Dr San Diego, CA 92103-8415 Contact: Arlene Yoffe (619)543-7736 Spoke to a very helpful woman who told us their center is in the process of trying to decide if the study should last 6 months or one year. She expects participants to be 40 years old and older, have mild emphysema, be a non-smoker with no concurrent disease and who has not undergone lung volume reduction surgery. The participant's schedule may be to visit the center once a week for 6 to 8 weeks, then once a month. You will be compensated for your time. She expected the study to be underway by mid-March.
The Pulmonary Paper Volume 10 No 4 COPD on cruise control! COPD people know how to live it up! I have just returned from a trip of a lifetime
watching people with chronic lung disease truly have the time of their lives!
The Johnstons sightseeing in Juneau.
Ellen and Carol Hutchinson posing onboard!
Norma relaxing in the ship's library.
Joyce and Don Kohl
As she Dotty arrives for a cocktail party, it doesn't look like it took much out of her!
Stan and Gail Dillard trying their luck!
The "no voice buddies" Lynn and Celeste
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The Pulmonary Paper