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Confronting Reality

Kevin Hyatt learned of his COPD diagnosis in 2007 right before his son’s wedding. Read more…

no-smoking-sign-300x200

The Great American Smokeout

Today the American Cancer Society is spearheading “The Great American Smokeout,” Read more…

From cpapsuppliesplus.net

What is a BiPAP and How Can it Help Me?

Dear COPD Doc,

I have a COPD friend who was recently prescribed BiPAP therapy. Read more…

A pulse oximeter

The Deal with Pulse Oximeters

Dear COPD Coach,

Some friends of mine have told me that it is a good idea for a COPD Read more…

The C.O.P.D InfoLine!

January 25th, 2012 | Author: Fabiana Talbot

“How can we help you?”

This is the question that frames the philosophy behind the C.O.P.D (Call Our Patients Direct) Information Line (InfoLine).  Staffed by COPD patients, the InfoLine provides guidance and referral information to those living with COPD.

The toll free phone number to reach the
C.O.P.D Information Line is:

1 (866) 316-COPD (2673)

The InfoLine has taken thousands of calls since its inception in 2007. It was formed with the support of the National Heart, Lung, and Blood Institute (NHLBI) to promote COPD awareness, education, and advocacy.  It continues to expand its reach by staying informed about community needs and actively recruiting new Associates.  “We are people living with COPD trying to reach out to help others,” says C.O.P.D. InfoLine Manager, Pam DeNardo.

For information regarding pulmonary rehabilitation facilities, support groups, questions about COPD, clinical trials—you name it!—an Associate is there to help.  Many have already utilized the line to subscribe to the COPD Digest and other COPD Foundation materials!  Not only does the center serve as a virtual information hub, it fosters the growth of a special community of COPD advocates and friends.

The InfoLine operates Monday through Friday from 9AM to 9PM (EST). You can call toll-free at 1-866-316-COPD (2673).

Become an associate and help those in need! If you are a patient or caregiver with Windows PC, high-speed Internet, and telephone, call the C.O.P.D. Information Line at 1-866-316-COPD (2673) or email us at info@copdfoundation.org!

Costs of Supplemental Oxygen

January 25th, 2012 | Author: COPD Coach

Dear COPD Coach,

My husband has COPD and uses supplemental oxygen 24 hours a day. We also use an air cleaner in the room he spends the most time in. I have noticed that our electric bill has been much higher since he started using oxygen. Since we are on a fixed income, is there anything we can do to help with the cost?

Costs and COPD

Dear Costs,

While today’s concentrators and air cleaners are more efficient than they once were, the cost of running them still adds up, and can be difficult for people on fixed incomes. In regards to the concentrator, there is little you can do to cut the costs of operating the unit. However, with the air cleaner there are a couple options that are available to you. There are air cleaners on the market that can be adjusted to reflect the size of the room, which means you can “dial the unit back” if the room is smaller. There are also units available that either have timers or can be set to an automatic mode to speed up when movement in the room occurs.

As far as the cost of running the concentrator, you might be able to deduct the electricity cost as a medical expense on your taxes.

From oxygenconcentrators.org

However, it is important to note that you can do this only if you itemize. In any case, you need to talk with a tax professional to determine your status. If the air cleaner is prescribed by your doctor, it is possible to deduct this cost also.

To determine the cost of running your equipment you will need to do a little math and make a phone call. First, call your electric company and ask the price per kilowatt hour (KWH). It should be something like 9 or 10 cents. Now look at the back of your unit where it states the voltage and amps. For this example we will say 115 volts and 5 amps.

Now you need to figure out the number of kilowatt hours (KWH) the unit uses in a year:

115 volts X 5 amps = 575 watts

575 watts X .001 KW/W =  .58 KW

.58KW X 24 (hours a day) X 365 (days of the year) = 5080.8 KWH/Y (Kilowatt hours per year)

If your cost per KWH is 9 cents: 5080.8 X 0.09 = $457.28 (cost per year)

Most concentrators have a hour meter built in and you can use this to get an accurate measure of the number of hours the unit has run in the year. You should also keep a copy of your oxygen prescription for your tax records.

One other thing you might want to check is what plans your electric company may have to help offset the cost of running medical equipment. Some electric companies offer a discount for the use of oxygen concentrators. You might also consider asking your electric company if they have a budget plan where your bill is averaged into regular monthly payments to offset either summer cooling or winter heating costs.

Most likely, the amount you will actually be able to get back from a tax deduction will not be substantial, but then again, every dollar can help! Also make sure you deduct any “out of pocket” costs for oxygen supplies!

Best wishes,

The Coaches Corner

Ask the Expert is aimed at providing information for individuals with COPD to take to your doctor, and is not in any way intended to be medical advice.

If you would like to submit a question to the Coaches Corner email us atcoachescorner@copdfoundation.org. We would love to hear your questions and comments. You can address your emails to any of the following: COPD Coach, Caregiver Coach, COPD Doctor or COPD RT.

Be Your Own Advocate!

January 20th, 2012 | Author: Katelyn Harding

In Ken Samonds’s eyes, wife Carolyn, who is a ZZ Alpha, is the “perfect patient.”

“I think Carolyn is her own best advocate as a patient. I remember how my parents were when they were getting to be our age, and they didn’t know how their body worked. They were afraid of doctors and when they finally did need medical care, they didn’t ask any questions or get involved in making any choices,” he says. “As a receiver of medical care, that’s not how Carolyn operates at all. There’s a list of things that she does that all Alphas should do.”

Carolyn says that when she first learned of her diagnosis in 1993, she didn’t know anything about Alpha-1, but it helped that she had very positive doctors.

Carolyn and Ken

“It was devastating, but I must admit, my whole life I’ve had things like that happen. I began to think about my father—I really think he had this disease but that was back in the 60s and nobody knew about it then,” she says.

In addition to having Alpha-1, Carolyn also has congestive heart failure. Her Catch-22 with those disease states is that she isn’t a candidate for a transplant for new lungs or a new heart, because of the other disease.

Some of Carolyn’s habits that Ken is referencing include:

  • Reads any/all literature about her disease, and tries to understand them and figure them out
  • Attends national meetings, always asking questions
  • Brings scientific papers to her doctors, and asks for tests.

“She’s on top of it as much as they are. She asks questions about her choices, pros, cons, pluses and minuses, risks and benefits,” he says. “She gets second opinions, and has both local doctors and a crew in Boston who she sees once a year. She also keeps her own set of records and makes copies of reports, tests, anything.”

Ken, 69, also says that wife Carolyn, 70, keeps all her doctors on their toes.

“She engages them as both a friend and a patient. I firmly believe they really care about her as a person,” he says. “She keeps track with her complicated set of medical schedules, medications and appointments, and it’s amazing. She always wants to know, ‘why’—‘why am I feeling bad?’ ‘why am I feeling good?’ and forces the doctors to explain.”

“She’s always challenging them, and she can’t just sit back and not be a participant. This is why I hold her up as a model of the perfect Alpha-1 patient.”

Carolyn continues to do as much as possible, despite her breathing difficulties, and still lives a full and rewarding life.

How Can I Sleep While on Oxygen?

January 18th, 2012 | Author: COPD Coach

Dear Readers,

First, we want to thank you for all of the great comments and tips you sent in during our “Ask the Readers”  series. We were really impressed by how inventive and resourceful our COPD community is! One of the letters we received can be best answered by a wider community. So for this week, we are asking all of you readers to actually be the “Coach” and help this person out!

Dear COPD Coach,

Recently, I was told by my doctor that I need to start using supplemental oxygen at night. Since I have started using the oxygen, I have not had a good nights sleep. I get tangled up in the hose, and wake up with it wrapped around my throat or my body. What do I need to do to get a good nights sleep?

Sleepless

If you have a solution for Sleepless, please enter your ideas in the comments section.

If you enjoy helping others, why not consider joining our Coaches Corner Team! The Coaches are all people just like yourselves, and are either COPD patients and caregivers. It doesn’t require a great time commitment, and your efforts can really offer support to many people. If you think you might be interested, send us an email at coachescorner@copdfoundation.org or call the C.O.P.D. Information line at 866-316 COPD (2673).

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