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5-16 -- Transplantation Criteria For Patients With Severe PH And Grossly Impaired Right, But Relatively Normal Left Ventricular Function
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| Update on Change in Medicare Payments to DME Providers & What it Means to You. |
Periodically we post information here about the plan in place to cut Medicare spending by reducing benefits to Durable Medical Equipment Providers (DME) in the U.S. Well, things are coming to a head. Phase 1 of competetive bidding is taking place now and soon the winners and losers will be announced. If you're currently doing business with a DME firm, you'll want to stay tuned. Find out what this may mean to you HERE. |
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Did You Know?
Tidbit: something you should know, but probably don’t.
The USDA allows producers of "All Natural" chickens to inject the birds with a sodium solution. This adds weight which increases the price and adds hidden salt to our diets. If you're trying to avoid salt - and most of us are - you'd better start reading the chicken label too!!!
To find out more about this and other tidbits, click here.
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DOES YOUR CHICKEN TASTE SALTY?
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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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| Curious About Healthcare Around the World? |
The Frontline special that aired recently on pbs stations around the U.S."Sick Around the World" gives us a peek into healthcare systems of a number of developed countries. If you think the U.S. healthcare system needs reforming, you may want to see how others have tackled this complicated issue. WATCH THE SHOW ONLINE
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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 Contributors: Karen Jo Whittlesey and Linda Washburn:
March 27 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
Airline Travel and Portable Oxygen Concentrators (POCs)
Current Controlled TrialsClinicalTrials.gov
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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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| HELP WANTED |
Fundraiser
If you have experience in grant writing for not-for-profit organizations and a proven track record, we could use your help. Contact us.
Researchers / Writers
We’re always looking for people willing to research a topic and write new content for the site. If you have an interest and some time to spare, Contact us. |
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