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Find inspirational stories, tips from the COPD Coach, events, and current news on the COPD community blog. Have a question regarding COPD that you would like to share with our community? Contact our COPD Coach. Coaches Corner 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 at coachescorner@copdfoundation.org. We would love to hear your questions and comments.

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Archive: June 2015

Beating the Heat

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Summer has officially arrived and it is turning out to be a scorcher in many parts of the country. For many this might mean some discomfort, but for those with COPD extreme heat can be crippling or even deadly.

Here are a few tips to beat the heat:

  • Stay indoors. First and foremost, try to stay indoors with air conditioning as much as possible. If you do not have air conditioning, try to stay with a friend or go to a public space that does (library, for instance).
  • Drink plenty of water. Avoid sugary or alcoholic beverages – they will dehydrate you. Be sure to drink plenty of fluids, even if you do not feel thirsty or are inactive.
  • Plan your outdoor activities carefully. If you must be outside, try to limit your activities to early mornings and evenings.
  • Have someone check-in. It is a good idea to have a “buddy,” friend or family, call to check in on you every so often. You may even ask a neighbor to make a visit to your home to make sure you are OK.

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Tags: heat living summer
Categories: Tips for Healthy Living

One Heck of a Ride

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"Hope is everything. That’s what I tell everybody, ‘Don’t ever give up hope. Always have something to look forward to. Always, always hope,’” Cathy Jo (CJ) Tuomala says. “I am so grateful for what I have, and for the days I have with my family. Life is amazing.” This mantra is something CJ has developed over the years, through which she’s been diagnosed with COPD, and received both a double and then later a single lung transplant.

Diagnosed in 1993 with Stage-4 COPD, CJ (who was 35 at the time) was told there was nothing doctors could do for her. She was a smoker at that point, and it took her several years to quit. Her doctor said her lungs were in the condition of a 75-year old person. Also around that time, CJ had three young girls, now all in their 20s.

“I was a single parent at the time and my goal was that I wanted to see them finish high school. I would think to myself, ‘God, please let me live to see them through high school.’”

CJ says she wasn’t evaluated until 2003, and received a double lung transplant through the UCLA Health System in November 2004. Sixteen months later, CJ began rejecting her lungs, and was admitted back into UCLA. She was seriously ill and was told she was too stick to receive another transplant.Hearing this, CJ says her stubbornness took over, and she worked and fought to get healthier to receive another lung transplant. In 2008 her hard work paid off, and she received a single lung transplant, not a double because doctors said her heart wasn’t strong enough to do the bypass.

“Going through those transplant are challenging and it’s a hard ordeal. But you have to focus and sit down,” CJ says. “When you’re going through episodes, you use pursed lip breathing and that’s really all you can do at times until your next breath. And you have the anxiety to deal with as well.”

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Categories: Personal Stories

Elise: A Life Without Limits

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This blog post was written by Elise VanCise, an individual with COPD who lives in Florida.

One thing that pushes my buttons is being told, “You can’t.” When I started writing my first novel that inner voice started whispering all the reasons I couldn’t write a book. Especially under the conditions I had chosen to write under.

It was November 2006 during NaNoWriMo or National Novel Writing Month. During this challenge you have 30 days to write a 50,000 word novel. I had a few people around me saying, “There is no way you can do that in only 30 days. It takes years to write a novel.”

I was working a full time job, homeschooling my son and writing my socks off every minute in between. Some days it was hard to get to that goal of at least 1,700 words.

Other days the story of Aaron and Sarah poured on to paper 5,000 words at a time.

Living with COPD is just like that. Some days are a struggle to get out and go, while other days you forget you even have a lung disease. Because of that roller coaster ride of good days and bad days we feel like we have to put limits on ourselves.

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Tags: COPD inspiration living support writing
Categories: Personal Stories

How to Conserve Your Energy with COPD

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Dear Coach,
My question concerns conserving energy. I’m only 56 years old and I really enjoy a shower and shampoo, yet the exhaustion of that activity wears me out so badly that it takes me 1-2 hours often to get my energy back. It’s hard to enjoy something when it results in such debilitating fatigue.

Thanks so much for your help in this matter and the assistance you provide so many in need.

—Need to Regain My Energy

Dear Need to Regain,
The only way I know how to handle energy conservation—in addition to maintaining strength in the muscles of your arms, legs and hands—is to do things smarter. For example, you could invest in a shower or bath chair and take your showers while seated. Use warm water as opposed to hot. Use water to get yourself wet, turn it off to lather up, and turn it on again to rinse. Have a terrycloth robe close by to dry off as opposed to using a towel. Also, many find that a hand held shower is easier to use. And if you require supplemental oxygen, wear it in the shower. Don’t worry about getting water up your nose.

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Categories: Coaches Corner

A Superhero Dad

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This blog post was written by COPD Advocate, Dawn Snider.

William (Bill) Brezinski was my father. He was born and raised in Chicago, IL by his divorced father. He lived with his two brothers, Lynn and Bruce. His mother remarried and had three other children, Gloria, Dennis and Lucy. All three of his brothers preceded him in death. He decided to enlist in the Army on November 22, 1963. He was sent home because the president had just been shot. He came back the next day and signed up. That was the start of a 20 year career. My parents met in August of 1969 and were married on October 2, 1969. They were married for 44 years. My brother, Bryan and I were their only children. After retirement my dad began a career with the Maricopa Sheriff’s Department as a correction officer. In 1998 he had to leave his job due to his health. He was diagnosed with COPD and a serious heart condition. The medication he had to take to stabilize his heart made his COPD worse. He had been a heavy smoker and was exposed to Agent Orange in the Army. He also worked as a mechanic in poorly ventilated garages. On June 11, 2014 (his 68th birthday) he passed away from complications related to his COPD.

I often refer to my dad as my superhero. He was a good husband and loved my mother very much. He was an amazing friend. At every base my dad would take a few of the single guys under his wing and bring them home for holidays. He was a great dad. Just before he passed away he asked me if I thought his was a good dad. I asked him if he thought he was a better father than his father. He said “Hell, yes!” and my response was, well there you go, you win! He was a fantastic grandfather. He was so good with my oldest son and my nephew that my husband wanted to name our second son after him. He drove my oldest son to and from school every day until he started the fourth grade. He had a special relationship each one of his four grandsons.

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Categories: Personal Stories

Concerned About a Family Member

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Dear COPD Coach,
My mother was diagnosed with COPD 4 years ago. She is only 63 years old and she still smokes. I know she will not get better from COPD but I believe the smoking is negating all the oxygen and medications she takes for her symptoms. Over the past couple of months she has more fatigued legs and feet cramping and seems depressed. She stays at home in her comfort zone. She does as much as she can, but simple tasks like cooking exhausts her.

She doesn’t share anything on her COPD with me and I am wondering if there are stages of COPD? I fear she may be entering a stage where I may need to become more involved.

Do you have any suggestions?

—Concerned Daughter

Dear Concerned,
Let me begin by telling you how sorry I am that your family and particularly your mother are facing these difficulties. COPD does not only affect the person with the diagnosis, it usually has significant impact on the entire family!

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Tags: caregiving cessation concerns exposure help lifestyle smoking support tips
Categories: Coaches Corner

Are Pulse Units Useful for “High Flow” Patients?

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Dear COPD Coach,
I use supplemental oxygen, and generally use 4 liters at rest and up to 6 with exertion. I was wondering if it is possible for me to use a pulse flow portable concentrator. If not, is there a continuous unit that would provide enough oxygen? Is there a unit that would allow me to be able to fly on a plane?

-Looking for answers

Dear Looking,
For most “high flow” patients, most often a pulse unit is not an answer. Too often, it is assumed that a pulse unit that has settings of 5 or 6 indicates that this is the liter flow, which is not the case. I’ll explain. Continuous Flow units are rated in liters per minute. Because pulse units do not put out continuous oxygen, they cannot be measured in liters per minute. Instead, they are classified by size of the individual pulse, how often that pulse can be delivered in a minute, and when the pulse is delivered in the inspiratory (breathing) cycle. More recently, in order to compare the output to continuous flow units, the term “equivalent Liter Flow” is sometimes used.

The numbers on pulse units are settings, and are not standardized with other manufacturers. For example, a setting of 1 on a unit might really only be one half liter equivalent, which might mean that at a setting of 5, the unit might only be producing 3 liters equivalent. The other problem when a high flow patient uses a pulse unit is that it is often very easy to “over breathe” the unit, which means you are taking more breathes per minute than the unit is capable of producing. When this occurs, the user will either get a smaller pulse, a pulse with less oxygen, or no pulse at all. In a situation where you exert and become significantly out of breath, the unit may not be able to saturate you – at any setting.

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Tags: breathe pulse flow unit supplemental oxygen travel
Categories: Coaches Corner

I'm Stuffed Up - What Should I Do?

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Dear COPD Coach,
I have a real problem bringing up mucous. The worst time seems to be in the morning. I have a couple questions: Is this common with COPD and what is the best way to get rid of the mucous?

-Stuffed Up

Dear Stuffed Up,

Mucous is indeed a problem for many who have COPD especially if you have a chronic bronchitis component with your COPD. It is also not uncommon to have a great deal of mucous in the morning. Oftentimes, the mucous will settle either high up in your lungs or seem to be blocking your airway. Until you are able to clear this mucous, your breathing will suffer and most often you will experience a lack of energy (as if anyone has a great deal of energy in the morning).

It is important to try and thin out the mucous in order to make it easier to bring up. If mucous is allowed to thicken it could form mucous plugs that may block off portions of your small airways. You should talk with your doctor about the possibility of using a product like Mucinex (which is available over the counter but can be prescribed in higher strength). Drinking lots of water throughout the day can also help thin out the mucous (always check with your health care provider before increasing fluid intake as it may affect your heart). A simple method some have found helpful is to drink something very cold followed by something very hot first thing in the morning to help loosen the mucous clog.

If you are like many folks with COPD, you may not have enough strength to cough up the mucous especially in the morning. If this is the case, there are a variety of mechanical assistance devices available to make mucous clearance a little easier with less effort on your part. These devices are divided into two categories: internal and external.

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Tags: airways clearing help mucous
Categories: Coaches Corner Tips for Healthy Living

Concerns of a Tired Caregiver

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Dear COPD Coach,
My husband has COPD, is on oxygen and was diagnosed about two years ago. Since he started using oxygen he sits all day in his chair and expects me to wait on him “hand and foot.” We are both in our early 70’s. He calls for me to bring him something to drink or eat, and even to bring him his paper or reading glasses. Just the other day he wanted me to swat a fly that was bothering him. I understand he is not able to do all the things that he used to, but he is just exhausting me! I know he can do more than he is letting on because every afternoon he grabs his oxygen tank and takes off in his car to hang around with his friends for several hours. After he gets home, it is back to the chair and me having to constantly wait on him. I want to be a good caregiver, but I am frustrated. What should I do?

-Tired Caregiver

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Tags: burnout caregiver concerns help lifestyle stress tips tired
Categories: Coaches Corner

Mary Kitlowski: Running On Air

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Mary Kitlowski was an avid runner for years until 2001 when a debilitating lung infection made any type of physical activity feel impossible. She was diagnosed with a rare disease called Primary Ciliary Dyskinesia and had to use supplemental oxygen; though she tried, she did not run again until 2013. With her husband's encouragement, Mary began to build up her endurance little by little. In September 2014, she ran a 5k with a portable oxygen concentrator on her back. Soon thereafter she started the "Running On Air" campaign to educate others about lung diseases and inspire those who use oxygen to live full and vibrant lives.

Mary is calling upon the COPD community to help her share her story. The editors of Runner's World magazine are looking for a special runner to be on the cover of their December issue. If you think Mary deserves a spot on the cover, vote for her here. You must use a Facebook or Twitter account to participate and can vote once per day until July 22, 2015.

We caught up with Mary to learn more about the "Runner's World" competition.

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Tags: competition exercise inspiration magazine marathon oxygen Runner's World running supplemental vote
Categories: Personal Stories

COPD Crowdshaped: Don't Forget to Vote!

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COPD Crowdshaped

Wow! What a great first day we are having at COPD Crowdshaped in San Fran! The group is coming up with some fantastic ideas that they think could help to enhance the lives of all people affected by COPD. We would love to hear your thoughts and feedback. Be sure to vote for the best ideas on the COPD Crowdshaped event page tonight at 9 p.m. EST and tomorrow morning!

Each community member is provided 10 votes. You can distribute those votes throughout the ideas as you see fit. You can allocate a minimum of 0 votes and a maximum of 5 votes for any given idea.

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Tags: COPD Crowdshaped ideas innovation support
Categories: Events

Supplemental Oxygen: Taking the First Steps

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Dear COPD Coach,
I was diagnosed with COPD about 5 years ago. My doctor has just prescribed the use of supplemental oxygen. What do I need to do next?

-Looking to Breathe

Dear Looking,
The first thing you should do is discuss with your doctor what type of delivery system is best for you. This discussion should include addressing your needs not only at home, but also when you are out and about. Be sure to document your discussion. Your doctor will then provide a certificate of medical necessity indicating that you require supplemental oxygen and what equipment you will need. Make sure this certificate of medical necessity contains all of the items you discussed.

Your second step is to identify an oxygen supplier that is able to address the needs set forth in the certificate of medical necessity. Know that your oxygen supplier is not your doctor and cannot make decisions about the type of equipment you require- only you and your doctor may do this! Once you are provided equipment, you generally cannot change the type of equipment or type of delivery system for a term of five (5) years. Note: if your oxygen requirements change, your certificate of medical necessity should be updated. Your oxygen supplier is obligated to provide equipment that fits that need with a new certificate of medical necessity.

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Tags: first help oxygen steps supplemental tips
Categories: Coaches Corner

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