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10-10 -- Fund for Nathan's Hope Clinic Established
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| VOLUNTEER |
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Did You Know?
Tidbit: something you should know, but probably don’t.
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Certain Over-the-Counter Drugs Pose Special Hazards to PH Patients
When you visit your PH doctor, you'll want to provide a complete list of the medications you take. This list should include even casual use of over-the-counter medications as some are contraindicated in patients with heart / lung disease such as pulmonary hypertension.
To find out more about this and other tidbits, click here.
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The Doctor Can't See You Now
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If you're having trouble getting an appointment to see a primary care doctor or feel rushed during your appointments, you're not alone. Fewer and fewer graduates from medical school are choosing this field of practice; given this trend and the aging of the U.S. population, things are bound to get worse. One PCP in this revealing radio documentary said he feels like a hamster on a running wheel. A few doctors have broken out of the traditional role by going into a private "country club" sort of practice. Their patients pony up a yearly membership fee — several thousand dollars or more — to have quick and easy access to their primary care doctor. Those who cannot afford to join, wait in line if they can even find a doctor who is willing to take them. You won't want to miss this one. LISTEN TO THE PROGRAM HERE |
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| FINALLY! A Ruling by the D.O.T. re: use of Portable Oxygen Concentrators. The ruling - the Air Carrier Access Act - states that airlines MUST accept certain approved POC's onboard flights. The ruling which does not take effect until May of 2009 includes some key provisions and caveats. Read more here. |
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BOOK RECOMMENDATION
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Dr. Nancy Snyderman, who most of us know from her television appearances, has a new book titled, "Medical Myths That Can Kill You: and the 101 Truths That Will Save, Extend and Improve your Health". Her book, written in a warm, straightforward style, is filled with interesting facts and fallacies about health.
Listen to a recent interview with Dr. Snyderman on KQED.
The book is available online through this link. |
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| GET MORE OUT OF YOUR DOCTOR VISITS |
There are easy, practical things you can do to foster a good working relationship with your doctors and help ensure productive office visits. LEARN MORE.
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 Fast Food / Slow Food - Diet and Health
There's a movement going on around the U.S. in response to the diabetes and obesity epidemic. People who are serious about their health have begun to trade some of the time they might have spent on the couch or in front of the computer to shop wisely and cook healthier meals. It's called the slow food movement.
For PH'ers, being overweight puts extra strains on the body and we all know what excess sodium and calories do to us. While "convenience" foods may taste good, they have no place in a PH'ers diet as calories and sodium content is typically very high. If you're addicted to fast food, you'd be wise to cut down or save it for a special occasion.
Read the full article here, including some helpful links.
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MORE THINGS YOU NEED TO KNOW ABOUT YOUR SOCIAL SECURITY BENEFITS |
Alan Harder, our social security guru, has provided some very useful information about the social security system in the U.S. in parts three and four in his series of articles. If you need to decipher the SS lingo, you'll want to read ALPHABET SOUP. If you are thinking about returning to your old job or tackling some other employment, you'll want to read WORK AND SSDI. Alan is also available to take your questions at SS Q&A |
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THE CANADIAN STEM CELL TRIAL FOR PAH IS GOING VERY WELL |
No longer decades into the future, a clinical trial for PAH patients using adult stem cells is currently taking place in Canada. The study taking place in Toronto and Montreal, is open to people worldwide who are able to travel to Canada. Read the in-depth interview with Michael Kutryk, M.D., the cardiologist and study director. |
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| President's Budget contains more Cuts to Medicare |
Starting with the Deficit Reduction Act of 2005, payments for DME including home oxygen systems have been sliced and diced. The future of coverage for many devices we've come to depend upon, are in serious jeopardy. To find out more, read about the President's Proposed 2009 Medicare Budget at ACTION CENTRAL.
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| BY INVITATION ONLY - SOMETHING NEW FOR YOU! |
PHC has offered folks a way to communicate through their online diaries for years, but now there is something new. If you've wanted to write, but did not want your life open to everyone out there, this may be the ticket for you. You can establish a diary that will be accessible by invitation alone. If you're interested, send us a line and we'll set you up. |
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| Choosing a DME Provider |
If you are discussing the possibility of adding supplemental oxygen to your treatment regiment or have been on o2 for awhile and are not happy with your current supplier, you'll want to consider your options. There are a lot of choices out there so you'll want to shop around. Read the feature article. |
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REVEAL REGISTRY
An Important Development in the Study of PAH.
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As many of us have come to appreciate, treatments and outcomes vary from one PAH patient to the next. Treatment protocols vary from center to center and then too, many patients have underlying conditions that have caused and drive their PAH. With a desire to share experience and improve treatment, data is being collected on patients all across the U.S. Find out more about the REVEAL REGISTRY. |
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 Creative Corner
Newest Contributor: Karen Jo Whittlesey: July 22 2008
Although PAH may slow us down, it does not stop our creative juices from flowing. Some of our PAH friends have found comfort and purpose in expressing themselves creatively through painting, gardening, needlework, writing and many other pursuits.
In the Creative Corner you will see how others have chosen to cope with illness and loss by channeling their creative energies. We are, after all, more than the sum of our echo numbers and pulse ox readings.
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FOR TRACLEER® USERS IN THE U.S.
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If you are taking Tracleer® and reside in the United States, you will want to check out a new program launched by Actelion they call Sure Steps. Sure Steps has been designed to provide education and support for Tracleer® users. To find out more, go here.
Read a recent press release about the Sure Steps program. |
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Useful Tools and Sections You Won’t Want to Overlook: |
Find a PAH Specialist
FDA Drug search
Tips & Tricks for living with PAH
Find or List a Support Group
Current Controlled TrialsClinicalTrials.gov
Airline Travel and Portable Oxygen Concentrators (POCs)
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PHC Chat is
Where It’s At |
On any day or evening of the week, you just might find someone in chat looking for someone to talk with. The door is always open. Planned chats will be announced on PHFriends, so it you have not signed up for our private message board and want to be apprised when a group of chatter-boxes is planning a get-together, sign up now. |
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