Posts in the Personal Stories Category

A Caretaker’s Concern

May 8th, 2013 | Author: COPD Coach

Dear COPD Coach

My husband has severe COPD and for the last month he is getting out of breath whenever he eats, showers or does any activity that he has to exert energy.  Is this normal?

-Concerned

 

Dear Concerned,

What you are describing is very common with COPD. However, the fact that all of these problems seem to have shown up suddenly, it might well be a sign of an exacerbation. An exacerbation is when COPD symptoms flare up. It could be related to such things as high pollen count, change of weather, or more significantly, might be signs of an infection or inflammation. I would definitely talk with your doctor!

If it isn’t an exacerbation, it most probably indicates COPD progression. Getting out of breath after eating is often a result of hyper-inflated lungs. As COPD progresses, the lungs actually become larger and can push against the stomach. After eating large meals, the stomach in turn presses against the lungs resulting in the person feeling more out of breath. If your husband is experiencing this, the

(oxygenconcentratorstore.com)

(oxygenconcentratorstore.com)

best remedy is for him to eat smaller meals, more often. He should also avoid certain foods that can cause gas or bloating.  If he is  at or below ideal body weight, have him eat foods that are high in calories. Avoid salt as much as possible since salt can cause him to retain fluid, feel bloated, and increase the workload on his heart. Avoid simple carbohydrates (a few examples are white sugar, cake, fruit juice, bread and pasta with white flour)as these cause CO2 build-up in the blood causing less available oxygen. If he does eat foods containing carbohydrates, keep to complex carbohydrates like those found in fruits, vegetables and whole grain bread.

As for getting out of breath while showering, here are a couple solutions. First, try lowering the temperature of the water and keeping the door of the shower partly open to get rid of the steam. If you have an exhaust fan, be sure to run it during and immediately after showering. Use a shower seat (standing up and washing yourself is a lot of work.). A large handled bath brush can be a real help! Instead of drying with a towel, get an absorbent terry cloth robe so after the shower he can sit while it dries his skin.

Getting out of breath during exertion can be helped in a couple ways. Primarily, the best way is “plan ahead and take it slow.” Suggest that he ecides ahead of time what he needs to accomplish, figure out the best way to do it, and then proceed slowly while stopping when he begins to feel out of breath. It is very important that you discuss with his doctor about enrolling in pulmonary rehabilitation.  A certified pulmonary rehabilitation program can teach your husband some valuable tools such as how to safely accomplish exertions, how to eat properly, shortcuts to good hygiene and how to properly use medications. However, the biggest advantage to pulmonary rehabilitation is that the exercises that he learns will improve endurance lessening getting short of breath.

As a caregiver, it is important that you learn to spot signs of exacerbations. A good source of information is our Big Fat Reference Guide which you can download free at www.bfrg.org.

Let us know if there is anything else we can help you with.

-The COPD Coach

 

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 at coachescorner@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.

Air Quality from a User’s Viewpoint

April 26th, 2013 | Author: Jim Nelson

This is a guest blog post from Jim Nelson, an individual living with COPD.

Prior to the major miracle of a lung transplant, I had emphysema and chronic bronchitis, also known as Chronic Obstructive Pulmonary Disease, or COPD.  That means that my lung capacity was only a fraction of what it should have been, given my age, weight, etc. The measure of lung function is a major factor in the diagnosis of COPD. I should have been able to expel about three liters of air in a second. My tests revealed that I was only blowing out about 6/10 of liter, or  21% of normal.

from google.com

from google.com

It also meant that my respiratory system was super-sensitive to air pollution in any form. That included things such as particulate matter–dust, carbon monoxide, and ground level ozone. Ozone at ground level can be a very bad thing, especially for those of us who have enough trouble breathing without any outside interference! Sunlight and hot weather combine with auto exhaust, gasoline vapors, industrial emissions, and chemical solvents to form harmful levels of ozone.

Many urban areas tend to have high levels of “bad” ozone, but even rural areas are subject to increased ozone levels because wind carries ozone and the pollutants that form it hundreds of miles away from their original sources. As our population ages and the effects of tobacco use damage more and more lungs, it will become even more important to concentrate on improving the quality of our air.

Despite our best efforts, bad air will tend to find us.  We owe it to ourselves to shy away from smokers, to stay indoors on bad air days, to wear a surgical mask if we are exposed to pollutants.  Roll up the car windows and use the air conditioner if the outside air is loaded with dust or smog.  If you are exposed to dust or pollen or the like, a shower before bed is a good idea.

What advice can you offer to others living with COPD when it comes to managing bad air quality? What are some things you do?

Perplexed about Pulse-Oximeters?

April 24th, 2013 | Author: COPD Coach

Dear COPD Coach,

I would like to get a pulse-oximeter to keep tabs on my breathing. On checking prices I found that there are several for as little as $20 dollars and some that cost over $200.  I am really confused.  I don’t have a lot of money to spend.  What should I do?

-Perplexed

 

Dear Perplexed,

For a number of years in this country, pulse oximeters were very expensive and considered a prescription item. In the last few years we have seen a number of imported meters come on the market at a very low price point. While this may seem like a great deal, for most, if not all, it basically is a monumental waste of money and can lead to serious consequences.

529w

(boston.com)

If used correctly, a pulse-oximeter can be a very useful tool for a lung compromised individual. It can tell us when our oxygen levels are dropping, if we are being properly saturated with our supplemental oxygen, and in many cases give us advanced warning of an impending exacerbation (times when our COPD symptoms flare up. If the meter is inaccurate, or gives false readings it will result in either a false sense of security or send us running to the doctor when there really isn’t anything wrong.

As I mentioned in a previous letter, I recently went to a trade show where several importers were selling pulse-oximeters. I tried 10 different models and never could get a reading. To eliminate the possibility that it might possibly be a problem with me, I went right over to a booth of a well established company and tried their lowest cost model and immediately got a reading.

If you feel you need a pulse-oximeter, my best advice is the following:

 

1. Buy as good of a device as you can afford. If you need to wait to save enough money you are still better off than purchasing a device that will not function correctly, if at all.

2. Make sure whatever device you select is fully returnable if it does not work correctly.

3. Purchase a unit that is powered by either AA or AAA batteries, and not expensive medical grade batteries.

4. Take the unit with you to your doctor’s office or pulmonary rehab session and see how the readings compare with his calibrated unit. If readings between the two are not very similar, return the unit.

5. Speak with a professional as to how to understand your readings, and what readings would be concerning.

Lastly, remember that pulse-oximeters do not function well with all people and situations. Cold fingers, finger nail color or skin pigmentation can all effect readings. Also, never base results on one reading, but instead a number or readings – a trend — over a period of time. Pulse-oximeters are not a diagnostic tool in of themselves, but instead should only be considered a “snap shot” of your breathing at the time the reading is taken. Pulse oximetry cannot, and does not, replace more elaborate medical tests available to the medical professional.

 

-The COPD Coach

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 at coachescorner@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.

Have you subscribed to the COPD Digest?

April 15th, 2013 | Author: Fabiana Talbot

COPD Digest is the first free, internationally-distributed magazine that provides up-to-date information on research, latest therapies, legislative issues, and other useful information for COPD patients and caregivers.  Do you receive your free copy every quarter?

Subscribe today!

community4Articles featured in the COPD Digest cover updates on pertinent legislative issues, research, information for oxygen users, health and safety information on air quality, and personal stories that help give inspiration to readers coping with the disease. The magazine has featured articles by prominent researchers in the field such as Dr. James Kiley of the National Institutes of Health and the late Dr. Pete “Mr. Oxygen” Wilson. Prominent COPD advocates such as Grace Ann Dorney Koppel, wife of former news anchor Ted Koppel and spokesperson for the NHLBI Learn More Breathe Better Campaign, and Vlady Rozenbaum of COPD-Alert have contributed their stories for the Digest.

 

The COPD Digest is published quarterly, and each issue is also available on the COPD Digest website. You can subscribe to the magazine by visiting the COPD Digest website or by calling the C.O.P.D. Information Line toll free at: 1-866-316-COPD (2673).

Featured Sections:

The COPD Digest covers a wide-range of topics that are important for individuals with COPD, their families/caregivers, and members of the medical professional community. Though not limited to the categories listed below, the following lists some of the topics covered in every issue of the magazine:

Faces of COPD

Profiles courageous individuals with COPD who have found innovative ways to successfully manage their disease and overcome the many everyday obstacles caused by the disease.

Advocacy

Provides updates on COPD patients and groups who are taking an active stand in spreading awareness of COPD.

View from the Hill

Spotlights individuals who have influence over policy, rules, and the making of laws.

Consumer Savvy

Presents news on products, technology, and treatments developing in COPD research.

Community Chronicles

Supplies resources and information that enables individuals with COPD to better collaborate with medical service providers, thus allowing them to take control over their treatments.

Research News

Features the latest on clinical research trials and therapeutic developments related to the search for earlier diagnosis, better treatments, and a cure.

Start receiving your free subscription of the COPD Digest today!
Call 1-866-316-COPD (2673)
Or visit the COPD Digest homepage.

Why am I short of breath after eating?

April 11th, 2013 | Author: COPD Coach

Dear COPD Coach

Why is it I feel so short of breath after eating? More than a few times, after eating out, it was all I could do to get back to the car, I was so short of breath. I love good food, but am beginning to feel that it isn’t worth the pain of not being able to breathe.

-Breathless

 

Dear Breathless,

Feeling bloated or out of breath after a large meal is not uncommon with people who have COPD. There are  actually a couple reasons why this occurs. When we eat a large meal we require more energy to digest what we eat and experience more pressure on our chest and diaphragm. The result is we experience shortness of breath.

For many, COPD causes our lungs to become hyper-inflated, which means they take up more room in our chest. This results when air gets trapped in damaged areas of the lungs. When our stomach is filled, it can actually push against the lungs causing us to feel out of breath.

Senior Man Eating Fresh Fruit Salad

(wellnesscounselor.blogspot.com)

So, what is the answer? It is really quite sensible. Eat several small meals throughout the day. If you are at or below ideal body weight, eat foods that are high in calories. Avoid salt as much as possible since salt can cause you to retain fluid, feel bloated, and increase the workload on your heart. Avoid simple carbohydrates as these cause CO2 build-up in your blood causing less available oxygen. If you do eat foods containing carbohydrates, keep to complex carbohydrates like those found in fruits, vegetables and whole grain bread.

For some individuals with COPD, the simple act of breathing takes more calories than what we are able to take in. The result of this is either chronic weight loss or the inability to gain weight. People experiencing this should eat snacks loaded in calories. While not considered healthy for “normal” people, these foods might be something like pudding made with whole milk, cheese that is not “reduced” or “low fat,” eggs and buttered popcorn. If eating dairy foods ( a problem for some with COPD as they can result in more mucus) drink plenty of water afterwards. Fried, greasy and spicy foods, carbonated soft drinks and vegetables such as Brussels sprouts and cabbage can also cause bloating.

If you require oxygen, be sure to use it while eating. This will help you get less short of breath and also aid digestion.

If you still want to go out and have a nice meal, here are some tips that will make your meal easier and more comfortable:

1. Restrict foods that can cause bloating like raw fruits and vegetables.

2. Try to eat foods that you don’t have to chew as much like mashed potatoes or soup.

3. Eat slowly, taking time between bites.

4. Don’t rush off after you eat. Take some time to not only digest, but also to enjoy the company and the experience.

5. Once again, if you use supplemental oxygen, make sure you use it when you are eating!

There is no reason a person with COPD cannot go out and enjoy a meal with family or friends.  Be sensible, allow yourself plenty of time and have a great time!

-The COPD Coach

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 at coachescorner@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.

 

First-Time Inclusion of COPD in Hard-Hitting Anti-Smoking Ad Campaign

March 29th, 2013 | Author: Katelyn Turner

The Centers for Disease Control and Prevention (CDC) has, for the first time, depicted the impact of COPD in its national ad campaign, Tips From Former Smokers. The campaign highlights the overwhelming human and financial toll on the nation caused by smoking.

“The influence of the CDC ads, showing people living with the very real and painful consequences from smoking, will have a far-reaching impact and fuel our efforts to build public awareness, involve community leaders, and expand our out-reach to state officials and employers,” says John W. Walsh, president and co-founder of the COPD Foundation. “There is good evidence that supports the use of hard-hitting images and messages to encourage smokers to quit, to keep children from ever beginning to smoke, and to drastically reduce the harm caused by tobacco.”

Michael, photo taken from cdc.gov

Michael, photo taken from cdc.gov

The ad depicts Michael, an Alaskan native who was diagnosed with COPD at age 44. A smoker since he was nine-years-old, Michael ignored the symptoms until age 52, when he awoke gasping for air. He quit smoking that day and has since had to have part of his lungs removed. Living with COPD means that Michael now needs a lung transplant. Michael offers this advice, “If your doctor gives you five years to live, spend it sharing your wisdom and love with your children and grandchildren so they have something to remember you by.”

The campaign’s key messages include:

  • For every person who dies from a smoking-related illness, 20 more Americans live with an illness caused by smoking.
  • 30 percent of people have been diagnosed with COPD continue to smoke.
  • Individuals who need help quitting smoking can log on to www.cdc.gov/tips.

In 2012, the CDC revealed the world’s largest telephone health survey, demonstrating the severe impact of COPD in its Behavioral Risk Factor Surveillance System (BRFSS). Currently, an estimated 15 million U.S. residents are diagnosed with COPD. The data shows that 24.9 percent were never smokers, 38.2 percent were former smokers and 36.9 percent were current smokers.

For more information on Tips from Former Smokers, please click here.

Don’t Let COPD Control Your Life

February 19th, 2013 | Author: Fabiana Talbot

COPD is commonly considered a “smokers disease,” but did you know that 25-45% of patients have never smoked?  Second-hand smoke, occupational dust and chemicals, air pollution, and genetic factors also cause this disease.

“COPD is not just a disease of the elderly…a lot of people think of COPD as effecting people 65 and over but the prevalence rate of people 54 to 64 years of age,” said John Walsh, the co-founder and president of the COPD Foundation.

Many people mistake increased breathlessness and coughing as a normal part of aging.  “There are 15 million people diagnosed with COPD and an estimated 12-15 million symptomatic but not diagnosed, which is one of our big challenges,” said Walsh.

A few years ago, the NY Times covered a story about a woman who attributed her breathlessness to age and weight gain — only to find out later that COPD was the source of her breathing problems.  She maintained a positive attitude and did not allow COPD to dictate her life.  Her commitment to a regular exercise routine empowered her to take control of her health.

Tell your friends and family about the online COPD Risk Screener.  If someone you love exhibits warning signs of COPD, whether or not they smoked in the past, tell your doctor!

 

 

 

 

COPDF President John Walsh: Don’t Give Up

January 2nd, 2013 | Author: Katelyn Turner

Recently, COPD Foundation President and Co-founder John Walsh was featured in American Profile Magazine, discussing “How to Live Well With COPD.”

John Walsh

 

American Profile: Given your personal experience with the condition, what are some of your best tips for living with COPD?An excerpt:

John Walsh: I think first, take care of yourself. Don’t give up. Make certain that you maintain the regimen of medications that your doctor prescribes. Adherence is so important for someone with COPD to reduce the symptoms, which ultimately helps to reduce the exacerbations, the lung infections, and the lung flare-ups that we get. During flu season, you also want to avoid people who are sick. Everybody wants to avoid somebody sneezing in their face or germs being passed on. But if you have COPD, you definitely want to avoid those exposures. If something makes you cough, you definitely don’t want to be exposed to it.

Click here to read the full article on American Profile Magazine’s website.

Concerned for Her Mother’s Health

December 12th, 2012 | Author: COPD Coach

Dear COPD Coach,

My mother was diagnosed with COPD 4 years ago. She is only 63 years old. She is still smoking. 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!

You are very right in your assumption that by continuing smoking your mother is negating, or certainly significantly lessening, the effects of the oxygen and medications. By being more inactive, she is also not helping her prognosis. I have heard many stories of people recently diagnosed who, whether consciously or not, withdraw into their “comfort zone” and most amazingly continue to smoke despite the evidence that says smoking most probably caused their COPD! Those less educated about COPD will often assume the stance that “if this is going to kill me, I might as well continue what I enjoy!”

From your description of the situation at home, I believe that the time to get involved is NOW! Your mother’s continued smoking is not only destroying any benefit from the medications, it is also shortening her life dramatically!

While somewhat obvious, the first thing your mother needs to do is quit smoking. For some advice on helping her quit you may need to enlist the services of her pulmonary doctor. He might be able to provide you with a program that will allow her to quit. People with COPD often feel as if their lives are spinning out of control. Your mother should know that by quitting smoking she is taking control of the course of the progression of her COPD. It’s a known fact that quitting smoking is the number one way to slow the progression of COPD. For some advice on smoking cessation you can call our COPD Information line at 866-316-2673. The Information Line Associates are also individuals living with COPD, and can help you in your role as caregiver!

From caregivers.com

The second thing you need to talk to her doctor about is getting your mother enrolled in a pulmonary rehabilitation program. Through exercise, she will train her muscles to work on less oxygen, which will in turn cause her to get less out of breath on exertion. If there isn’t a pulmonary rehabilitation program in your area, talk with your doctor about exercises your mother can do at home (and maybe with you)! An increasing level of inactivity along with low oxygen levels may well be contributing to her problems with her legs and feet, and her inability to carry out everyday tasks.

There are indeed stages of COPD. The stages are now listed as A,B,C and D, with “D” being the most severe.  Usually, the need for full time oxygen would place the person at stage 3, possibly 4.  How long a person remains at each stage depends on a number of factors. If they are beginning to have exacerbations (times when COPD symptoms get worse), especially ones requiring hospitalization, this can hasten the progression of their COPD. Exposure to smoking (including secondhand smoke), dust, pollution, or chemicals can also greatly hasten the progression. Remaining inactive factors in, as does not following a correct diet and medication schedule.

One of the most important aspects of COPD is education. The more you know about COPD, the better you will be equipped in the role of her caregiver. Knowing what signs to look for to ward off an exacerbation is critical, as is knowing about diet and exercise. A good source of information is our Big Fat Reference Guide.

At some point, your mother is going to have to come to terms with the decision that she can either smoke and continue on a downward spiral, or seize control of her disease and learn to live with the highest quality of life possible and be a part of the lives of her family. I don’t envy the task you or your mother face, but rest assured that we will be here if you need us.

Best regards,

The COPD Coach

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.

Help us Honor the Veterans Living with COPD This Veterans Day!

November 9th, 2012 | Author: Janina Kowalski

This Veterans Day, we’re celebrating the thousands of veterans living with COPD in the U.S.

Did you know that COPD is the fourth most common discharge diagnosis in VA hospitals? There are many veterans in the U.S. who are in need of proper screening, spirometry, educational tools, and a COPD community. Ultimately, the COPD Foundation aims to provide all of these for veterans.

This November 11th, we say thank you to all veterans!

Ken Benson views Veterans Day as a day “to honor and thank all that served in the military.”

“For me, it is very personal, as I lost many friends under uniform including my younger brother,” he says.

Benson, right, is a former Specialist First Class, U.S. Army

Enlisted from 1962 to 1965, Benson served during the height of cold war tensions. While stationed at Ft. Hood, Texas, he was part of Operation Big Lift , a historic deployment of the entire U.S. Army’s 2nd armored division to the front lines of cold war Central Europe. The 2nd division was commanded by General Patton in WWII and nicknamed “Hell on Wheels”.  In Europe, Benson worked as a general cryptographic repair and maintenance specialist.  This was a historic, turbulent time in U.S. History; Benson recalls learning of President John F. Kennedy’s assassination upon returning to the United States.

Benson was diagnosed in 1997 with adult asthma, severe emphysema and  Alpha-1 Antitrypsin Deficiency. He does not believe his COPD is Army-related, although he recalls becoming more out of breath than many of his fellow soldiers during early morning runs with his full Army gear on.

Today, Benson serves on the Alpha-1 Association Board of Directors (BOD). In addition to this, he sits on BOD for the U.S. COPD Coalition, and has lobbied in Washington, D.C. with the American Association of Respiratory Care. Benson sees himself as an advocate for COPD, stating “First and foremost, I am a COPD patient. I just happen to have a genetic component called Alpha-1 Antitrypsin.”

Looking fondly at her years in the Marine Corps, Katherine Labrie sees Veterans Day as a day “to honor all veterans.”

“To me, it’s a family honor since almost all of my ancestors back to the Civil War have served proudly in the U.S. Military, including my mother who was in the Air Force,” she says.

Labrie served in the U.S. Marine Corps from 1977-1984. As a Sergeant working in administration, she worked directly for generals and was stationed both in Camp Pendleton, California and Okinawa, Japan.

Labrie, former Sergeant, U.S. Marine Corps

 Working for generals, however, was not all pomp and circumstance; she recalls once standing at attention in front of a general only to have her stomach growl incredibly loud. This prompted the general to order, “Sergeant Labrie, go feed that thing!” Moments like these make Katherine grin and reflect on some light hearted moments spent in service.

In 1996, Labrie was diagnosed with COPD. She associates her COPD with her smoking, asthma, and twice a year bouts of bronchititis. However, Labrie shares that her experiences with COPD have been met with a positive, “can-do” attitude that the Marine Corp taught her.  Labrie states, “The biggest thing about being in the Marines was that we worked hard and had fun at the times when it was appropriate.”

Labrie currently serves as the COPD Foundation’s New Hampshire Advocacy Captain. In this role, she motivates those affected by COPD in her state to be involved in advocacy. In addition to this, Labrie is currently the Co-leader of the COPD Awareness Team for Breathe New Hampshire.

 Support the COPD Foundation today and help U.S. veterans living with COPD!