Breezeway. WY Pulmonary Hypertension Support Group (Nancy) or (Cricket)

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1 WY Pulmonary Hypertension Support Group (Nancy) or (Cricket) January 2009 Volume 2, Issue 1 Breezeway Articles: Teleconferences on hold Traveling with oxygen Medicare & Oxygen Living at high altitude Pulmonary Rehab a real benefit Help Wanted 2009 Meeting Schedule Did you know? Portable Oxygen Concentrators approved by the FAA for in-flight use by passengers requiring oxygen are: Inogen One AirSep Lifestyle AirSep Freestyle SeQual Eclipse Respironics EverGo Find more information here: ygen.org/airlineoxyg enpolicy.html Teleconference Meetings on hold Difficulty finding individuals to present information via conference calls has placed the concept on hold, but group leaders decided to hold face-to-face group meetings in even-numbered months. Cricket and Nancy realize weather conditions may prevent members from attending some of the gatherings, but we believe the need for meetings and contact with each other is important. Please attend when you can. The meeting schedule is on the last page of this newsletter. Clip the section for future reference. Traveling w/oxygen More Convenient Using supplemental oxygen does not mean a patient needs to stop leading an active lifestyle or to avoid travel. Many delivery options are currently available and more are in the developmental stage. Home concentrators are the workhorses for those on oxygen 24/7, but even those sturdy concentrators are becoming smaller and more energy efficient. Typically, a home system is a larger unit, which weighs 55 pounds and uses watts. These concentrators deliver 8 10 liters per minute (Lpm). A smaller concentrator (often used for travel because of its size) weighs 30 pounds and is quiet (less than 40 decibels). This unit is capable of supplying up to 5 Lpm and runs on 300 watts, emitting less heat than the fullsized unit. Programs for the meetings have not been confirmed at this time, but members will be notified as soon as they are determined. Videos from the Pulmonary Hypertension Association or demonstrations by members may be included. Group newsletters will continue to be published monthly and will be archived online. Most members receive the newsletter electronically via . An annual $5.00 donation to cover the cost of postage and printing is requested from those who prefer to receive the newsletter through the mail. Patients who are able to use pulse systems can rent or purchase one of the new portable oxygen concentrators (POC) for travel, although some patients are using the portable units as daily oxygen providers. By far the smallest POC displayed and in use at the Houston PHA conference in June 2008, was the Freestyle by Airsep. It weighs only 4.5 pounds. tml Several patients at the conference were using this small wonder. It runs on an internal battery but can also be powered with a battery pack worn around the patient s waist. The POC in its carrying case is smaller, although a bit heavier, than a full Helios liquid system. os.aspx (See Traveling with Oxygen on page 2)

2 Page 2 of 5 Traveling w/oxygen continued from page one Inogen and Freestyle POCs on display at the Houston PHA conference. The Inogen (left) is 11.5 x 6 x 12 inches compared to the Freestyle (right), which is 8.5 x 6 x 3.6 inches The Freestyle is limited to pulse delivery, and is approved by most major airlines for use in flight, which is a wonderful benefit over conventional oxygen delivery systems. The Inogen POC is also approved by the FAA for use in flight. It weighs 10 pounds and can be recharged via electric plug or using the cigarette lighter port in the family vehicle. One conference attendee, who does a lot of sailing, stated the Inogen may also be charged from a boat battery if the correct plugs are available. Another patient at the conference used the Inogen on a trip to Europe. She was able to charge the unit by using electrical current adaptors. The Inogen delivers up to 5 Lpm. Sadly, neither the Freestep nor the Inogen provide continual flow; however, the Eclipse (it weighs 18 pounds) does supply both pulse and continual flow up to 3 Lpm. Patients may rent or purchase a POC from their oxygen provider. Please make sure your doctor approves these units for your oxygen prescription before making any financial commitment. POCs approved by the FAA will bear the RTCA sticker. Even though the FAA has approved some POCs, not every airline will allow them on board. It is strongly advised that patients contact the specific airlines (ask for the oxygen desk) to determine if these units can be used in flight and if any additional requirements and/or forms must be submitted before flying with a POC. The supplemental oxygen patient has many alternatives to consider. Heavy compressed gas tanks are the mainstay, but liquid oxygen and POCs can help make a more active lifestyle possible for the patient. Ask your doctor which system will work for you. Medicare & Oxygen Concentrators According to the November/December 2008 issue of The Pulmonary Paper, oxygen users will not assume ownership of their concentrators. Beginning January 1, 2009, payments for the concentrator from Medicare to the oxygen provider will stop after 36 months. The supplier will continue to be responsible to service the equipment like changing the filters and checking the flow output. The supplier will continue to provide patients with portable oxygen. It will be covered as a flat amount that may or may not cover actual costs. In November/December, it was not known if Medicare is going to pay for travel oxygen, cannulas, tubing, and other disposable supplies after they stop concentrator payments to the supplier. After a five-year period, patients may elect to receive new equipment, which would restart the payment period. The supplier will be available for emergencies at any time of the day or night, even after their payments have stopped, yet they may only bill Medicare for one visit every six months. After a five-year period, patients may elect to receive new equipment, which would restart the payment period. If the patient does not choose to receive new equipment at that time, the provider is no longer obligated to service the concentrator. Suppliers may elect to become nonparticipating providers on January 1, 2009, so they may bill oxygen users directly. If that is the case, the patient will pay the bill and then submit and accept reimbursement Medicare will pay. The provider s costs of doing business may exceed the reimbursement. For more information, please go to

3 Page 3 of 5 Will Moving to a Higher Altitude Make My Pulmonary Hypertension Worse? Decrease atmospheric pressure at high altitudes leads to decreased oxygen within the lung and decreased oxygen content within the blood. For example, normal partial pressures of oxygen in the blood at sea level may be 85-95mm Hg, but the same person in Denver, CO, (at elevation 5,280 feet above seas level) may have normal partial pressures of 65-75mm Hg. These changes in ambient and absorbed oxygen can theoretically have at least two potential consequences that could affect a patient with PH. First, small pulmonary blood vessels (arterioles) constrict when exposed to conditions of low oxygen. This is a normal protective physiologic response at sea level to match blood flow to ventilation in the lung and divert blood flow away from areas of the lung which may temporarily contain less oxygen. However, when it occurs in the whole lung, it can cause increases in pulmonary pressures. It is felt that 9,842 feet (about 3,000 meters) is the approximate altitude, which is most clearly related to significant development of pulmonary hypertension due to hypoxemia (low oxygen in the blood). Previous studies have shown significant elevations of pulmonary pressures among residents of this altitude. These changes tend to reverse with return to a sea level existence. There have been no extensive, detailed human studies of the potential interaction of hypoxic vasoconstriction at altitude with proliferative vascular changes typically seen in patients with PAH. It is clear, however, that many PAH patients do complain of decreased exercise capacity and worsened symptoms even at modest altitudes. A second possible negative consequence of decreased oxygen levels in the blood is the usual occurrence of an increase in heart output to deliver the same amount of oxygen to peripheral tissues. This extra demand on the heart may make symptoms of PH worse given preexisting strain on the right ventricle. To further complicate the issue, some people may have genetic predispositions to react abnormally to the exposure to low oxygen levels (hypoxia). Various studies and estimates suggest that as man as 20 to 25 percent of people may have this characteristic. It might be expected that such a predisposed PAH patient may have substantial worsening upon exposure to even modest hypoxemia found at higher altitudes. Consensus opinions often suggest careful attention to oxygen supplementation when traveling to help lessen these potential problems. Advice of moving to sea level to assess any change in PAH symptoms may also be advocated. Travel or chronic residence above 8,000 10,000 feet (approximately 2,400 3,000 meters) for patients with PAH is typically discouraged. A week or more trial period of residence at any altitude may give an early indication of the impact of the move on your PAH. As always, discuss these issues with your pulmonary hypertension physician. This question and answer appeared in the Spring 2008 Pathlight on page 9. Robert Schilz, D.O., Ph.D. Director of Lung Transplantation and Pulmonary Vascular Diseases, Division of Pulmonology and Critical Care Medicine, Case Western University, Cleveland, OH provided this answer. What s Your Altitude? Lovell 3,832 Powell 4,393 Gillette 4,554 Casper 5,150 Lander 5,358 Riverton 5,525 Auburn 6,053 Cheyenne 6,062 Green River 6,115 Afton 6,240 Rock Springs 6,388 Evanston 6,749 Hanna 6,818 Laramie 7,165

4 Page 4 of 5 Pulmonary Rehab Benefits Cheyenne PH Patient Today, Barbara can exercise in the supervised setting of the Pulmonary Rehab program for up to an hour without feeling overly tired. Barbara Karash was diagnosed with pulmonary hypertension in She retired to preserve her health and strength. While she enjoyed working as a nurse manager in a local pediatric clinic, she was frequently exposed to respiratory infections. Barbara recalled that at the time of her diagnosis, she struggled to get through the day. I was always a walker. But gradually she had to start cutting back. I went from walking four miles to three miles down to the point where I d get up in the morning and wondered if I could walk at all, she said. Barbara said it was a relief when she finally discovered what was wrong. Fortunately, with the help of her physician, Pulmonologist Andrea Thornton, MD and the Pulmonary Rehabilitation program at Cheyenne Regional Medical Center, Barbara has reclaimed her life. Barbara related the discovery of her condition and how she s learned to cope during one of her two weekly exercise sessions offered through Cheyenne Regional Medical Center s Pulmonary Rehabilitation program. I walked, I didn t smoke, and I never worked in a paint factory or was exposed to fumes that would have done this, she said in a matter-of-fact voice. There s never been any family history, either. One day I didn t have it, and the next day, it seemed, I did. Being a walker, Barbara understands the value of exercise for keeping physically fit. If I don t exercise, I might get worse, she said. But Barbara must also be concerned about exercising too hard. This program is so important because they monitor you. They can tell if you are getting into trouble. Today, Barbara can exercise in the supervised setting of the Pulmonary Rehab program for up to an hour without feeling overly tired. Plus, she is adept at using several aerobic and weight machines. At first, Barbara just wanted to use the treadmill. They have encouraged me to do different kinds of exercises, she said. I hated this at first, she laughed, while using one of the program s elliptical machines. I could only go for two minutes. The staff encouraged Barbara to keep at it. She is now able to use the elliptical for 30 minutes and like it so much that her family bought her one as a birthday present to use at home. This article was taken from Your Health, Your Choice, Fall/Winter 2008, pages 2 & 3. Read the full article: WANTED for future Breezeway issues: Do you like to write? Share your poems, stories, or articles. Do you have a low-sodium recipe to share? Do you have ideas for articles? Do you have an opinion or comment about something? your contribution to pinnut3200@yahoo.com or mail them to Nancy Stearns, 1206 Timber Lane, Riverton, WY 82501

5 Wyoming Pulmonary Hypertension Support Group 1206 Timber Lane Riverton, WY PHONE: OR PHA s National Patient-to-Patient Helpline Disclaimer We encourage readers to discuss their healthcare with their doctors. This newsletter is intended only to provide information on PH/PPH and not to provide medical advice on personal health matters, which should be obtained directly from a physician. PHA and WY PH Support Group will not be responsible for readers actions taken as a result of their interpretation of information contained in this newsletter. WY Pulmonary Hypertension Support Group 2009 Meeting Schedule Unless stated otherwise, meetings will be held at the Riverton Public Library (1330 W. Park Ave., Riverton, WY) from 1 PM 3 PM (specific room locations may vary) February 21 st April 4 th June 13 th August 8 th October 10 th December 12 th Programs for the meetings have not been determined at this time. Write the dates on your calendar or clip out this section for future reference WY PULMONARY HYPERTENSION SUPPORT GROUP 1206 Timber Lane Riverton, WY Wyoming Support Group online TO: