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Articles for category Quality of Life

NTM/Bronchiectasis Patients and Carbohydrates

Posted on June 04, 2019   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Eating, breathing and feeling better are part of our daily goals and activities of daily life. What we consume on a daily basis definitely impacts our health and how we feel. A good diet can help to prevent respiratory infections and give our body the energy it needs to do the work of breathing and staying active.

As Hippocrates once said, “Let food be thy medicine and medicine be thy food.” We all wish it were magically possible to eat the right food and to feel better overnight. However, small steps made daily can help you on the road to feeling more energetic.

We must consume the vitamins and minerals our bodies need on a daily basis. When the number of calories taken in is too low to meet a person’s energy needs, the body breaks down fat and muscle for energy. This begins a negative cycle and could cause the breathing muscles to weaken and lead to shortness of breath. This could then lead to decreased appetite and weight loss and the cycle repeats itself1.

Your body produces more carbon dioxide when it breaks down carbohydrates. The extra carbon dioxide must be exhaled so when our meals are heavy in carbs, breathing can become more difficult2.

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Categories: Quality of Life

Managing Stress with Bronchiectasis and NTM

Posted on November 28, 2018   |   
Author: Gretchen   |   
3 Comments   |   
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This blog post was written by Jane Martin, BA, LRT, CRT

If you have Bronchiectasis/NTM, you well know that the effects of this disease can result in major changes to your lifestyle and activities. And these changes, and challenges, are bound to cause stress. Looking at common causes of stress (stressors), coping skills and techniques, and how to use a stress log for managing stress brought on by Bronchiectasis/NTM are valuable ways to improve daily life.

Let’s start by looking at some stressors commonly found with Bronchiectasis/NTM. You may have one or more of these, and you may have others that are not on this list.

  • Eating issues and digestive problems
  • Body image issues with low weight
  • Uncontrollable cough leading to embarrassment and/or social isolation
  • Side effects of strong, frequently-used antibiotics
  • Gastro-esophageal reflux disease (GERD)
  • Fatigue or Exhaustion
  • Cancelling plans due to not feeling well

So, what does it take to get through this stress? It is important to note that what works for one person may not work for another. Here are some examples of coping skills and techniques that may be helpful.

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Tags: bronch and NTM coping with chronic illness Quality of Life Stress with bronchiectasis Stress with NTM
Categories: Quality of Life

How Caregivers Can Practice Self-Care

Posted on April 24, 2018   |   
Author: Gretchen   |   
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This blog post was written by guest writer, Harry Cline, author and caregiver

 

For many caregivers, finding the best ways to ensure their loved one is well taken care of while also taking care of their own needs can be overwhelming. This is especially true for those who are charged with caring for an elderly family member. Balancing self-care with the correct amount of attention to their patient’s needs isn’t always easy and can lead to guilt or other negative emotions. It’s important to remember that, as a caregiver, it will be impossible for you to properly tend to your patient if you yourself aren’t happy and healthy. There are more tips and resources at the Caregiver Action Network.

Self-care involves a number of aspects, from ensuring that you get enough rest, to figuring out a daily exercise routine that will help you stay strong. Caregiving can take a physical toll, so finding a good way to keep yourself fit and in shape will help prevent injuries. 

Get in a workout

Taking care of your body is an essential part of being a caregiver and it can help you stay healthy while giving you an outlet for any frustrations or negative feelings you may have. Create a daily workout routine that incorporates all the things you need to feel good. One great exercise is yoga because it keeps you physically fit while allowing you to meditate and focus on the present moment, which will lower your anxiety. Also, consider learning more about stretching, which is wonderful for relieving stress. There are several stretchesthat can be done anywhere, and quickly, which makes it easy to fit stretching into your daily routine.

Surround yourself with support

Caregiving can be a very demanding job in a lot of ways, so it’s important to surround yourself with people who support youand will help out when you’re feeling overwhelmed. It’s also a good idea to maintain a healthy social life since being a caregiver will often require that you to be present for your loved one for many hours of the day. Maintaining friendships and other relationships will help your mental health even when the work becomes difficult. 

Eat well

Because caregiving can be such a difficult job, it’s essential to keep your strength up. Eating well-balanced mealswill help give you the strength—physically and mentally―to carry out even the most demanding tasks during the job. Pay attention to your body and its needs, particularly when it comes to the times between meals. If you work long hours, pack healthy, protein-rich snacks that you can grab quickly. 

Find a hobby

Having a hobby that you enjoy doing is a great way to relieve stress at the end of a long day, and it can help act as a sort of therapy when you’re feeling down. Whether it’s something creative, such as painting or writing, or social, such as playing basketball with a group of friends, having something to look forward to will let you release energy and make you feel healthier.



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Tags: Caregivers Exercise support
Categories: Quality of Life

The Challenges of Summer for Respiratory Patients

Posted on July 14, 2017   |   
Author: Gretchen   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Summer has finally arrived!!! It is a happy season for most people who enjoy spending more time outdoors. I loved summer to the nth degree when I was younger and before I experienced respiratory issues. Now, summers can be challenging for me for several reasons.

The warm temperatures are great as long as it is not too hot or humid. However, because high temps and high humidity can make respiratory patients feel exhausted quickly, I am now very cautious not to stay out too long on humid days because I know it will make me feel run down.  While every patient is different, historically, I have been ill with either MAC or another gram-negative infection every year in mid-August, over the past decade. My goal for this year is to prevent this reoccurrence.

Below are a few preventive measures that I am mindful of during the summer:

  • Pay attention to the weather channel to check when there are severe weather alerts for patients with respiratory issues.  Elevated ozone and particulate levels can greatly impact the way respiratory patients feel.It is wise to follow the recommendations made by your local weather channel to stay indoors during this time period. 
  • Stay hydrated with fluids. Water and non-carbonated beverages are the best choice. Caffeinated beverages may give a boost; however they can lead to dehydration. Avoid high sugar drinks since mycobacterium thrive in high sugar mediums. We also want to avoid the co-morbidity of type-2 diabetes.
  • Have an extra inhaler, nebulizer solution, and mucinex on hand in case you cannot get out to the drug store for a few days in the extreme heat.
  • Avoid hot tubs, as tempting as they may be, since mycobacterium can dwell in hot tubs and easily become airborne.

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Tags: bronch and NTM preparations Summer Tips
Categories: Quality of Life

Energy Management-The Key to Living with NTM/Bronchiectasis

Posted on June 12, 2017   |   
Author: Gretchen   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

NTM/Bronchiectasis patients have an invisible disorder, which as a patient, I feel few truly understand.

Dealing with chronic lung disease on a daily basis can be extremely challenging. A major symptom for many NTM/Bronchiectasis patients is fatigue, which often fluctuates with weather changes, among other things.

I describe myself as a Type A personality whose body on many days will not cooperate and feels more like Type D. I wake up, often un-refreshed, with a to-do-list awaiting me. To make life manageable and reduce frustration, I prioritize what is essential and go from there.

After years of living with NTM, I compare my energy to money in a savings account, which requires careful budgeting. On good days I accomplish quite a bit, on bad days much less.

Feeling so unproductive would affect anyone's morale but after more than a decade of living this way, I work hard to ward off discouragement.  I still have hope that miracles will happen! We are working on many fronts to achieve these "miracles" with more companies involved in seeking treatment options and scientists working on developing new medications. It is these signs of progress that give me inspiration not to give up on a better future for me and all the others out there who are dealing with NTM/Bronchiectasis.

On bad days, I have learned to keep a journal, listing things in my life that I am grateful for.... my family and friends, my home, my education in the healthcare field (which helps in dealing with this condition), and the professionals and network that I'm in touch with. Going back and reviewing my gratitude list helps gets me through not so good days and my belief that real progress is being made within this field and that my energy level may increase keeps me going.

It is truly a balancing act. Knowing how to adapt to your life can make the difference between continual frustration and measured optimism when routine tasks, such as personal care, housekeeping, and instrumental activities of daily living can seem overwhelming.

 

 

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Tags: Bronchiectasis Energy NTM
Categories: Quality of Life

Promoting Personal Well Being

Posted on April 07, 2017   |   
Author: Gretchen   |   
1 Comments   |   
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This blog post was written by Barbara Jo Matson who is living with bronchiectasis, asthma, and aspergillosis.

At the age of 15, I almost lost my life due to double mycoplasma pneumonia, which left me with 65% permanent scar tissue on my lungs. Today I am a 59 year-old woman living with bronchiectasis, asthma, and aspergillosis. My experiences with these conditions have altered my life in many ways.

As a result of the pneumonia, I spent 2 months at Walter Reed Army Medical Center and upon my return home I weighed 82 pounds and could barely hold my head up. It took a month to even be able to walk, and this was while holding onto walls.

Prior to my illness, I had studied some yoga. While recovering, I did yoga stretches and meditation, along with eating well and taking supplements. It truly made all the difference, both mentally and physically. I ended up making it through that school year with a C average, even after missing 3 months of school.

I attribute this quick recovery to the physical practice of yoga, along with my dedication to various meditation techniques. On a daily basis, for about 10 minutes at a time, I would light a candle, gaze into the flame and watch my thoughts go by. It made all the difference, as it allowed me to feel that I were investing in me, by doing something daily that may or may not have done any good; it was in the effort of it!

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Tags: Bronchiectasis Quality of Life Self-Care
Categories: Quality of Life

The Importance of Indoor Air Quality

Posted on September 20, 2016   |   
Author: Gretchen   |   
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Air quality is important to every individual, with or without a lung condition, but we know it can make all the difference if you are living with a breathing disorder. Read about how to maintain positive air quality within your own home:

https://www.copdfoundation.org/COPD360social/Community/Blog/Article/563/The-Importance-of-Indoor-Air-Quality.aspx

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Categories: Awareness Quality of Life

How does NTM lung disease affect your life?

Posted on September 14, 2016   |   
Author: Delia   |   
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In September of 2015, the Food and Drug Administration (FDA) convened a meeting on Nontuberculous Mycobacterial (NTM) lung disease. The meeting focus was on patients’ quality of life as it relates to the symptoms and treatment of NTM lung disease. Meeting attendees included patients, caregivers, patient advocates, healthcare professionals, patient advocacy organizations, and representatives from the pharmaceutical industry. The meeting allowed for the opportunity to hear directly from patients, caregivers, and patient advocates on their experiences with NTM and how it impacts their daily life. Although a successful meeting with various stakeholders in attendance, very little data exists in published scientific literature on the information discussed during the meeting.

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Categories: Quality of Life Research

My experience with BronchandNTM360social and COPD360social

Posted on June 27, 2016   |   
Author: Delia   |   
7 Comments   |   
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I first learned of COPD360social (the online community for COPD) when it launched in late 2014. I registered immediately after learning of COPD360social and have been active since then. As an individual living with bronchiectasis, I was extremely happy for the launch of BronchandNTM360social. These platforms allow me to connect with people who know about (and live with) these diseases. I am able to share many things such as my health condition, daily activities and experiences (good and bad), and seek feedback from other people like me. I feel gratified to have the opportunity to share these things about myself and receive the much-needed support back from the community. Additionally, sharing my experiences on these online communities has helped me talk about and explain my disease to family and friends.

I’ve come to the realization that these online communities are not solely learning about health conditions and problems; they’re much more than that. They allow me to learn about other people’s lives and how they cope with similar situations. I get to discover other participants’ daily activities, exercise, hobbies, and travel experiences. Members have encouraged me to explore different ways to enjoy life, despite my disease.

It is difficult for me to put all of these emotions into words. When I am actively engaging on 360social I feel connected. I feel grateful for the support I receive through these networks, and I sincerely hope others feel the same.

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Categories: Quality of Life Support

Living with Bronchiectasis

Posted on May 06, 2016   |   
Author: Gretchen   |   
17 Comments   |   
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This blog post was written by Mary Kitlowski, founder of Running On Air, who is living with Bronchiectasis.

After years of searching for answers to my health problems, my first real answer came from the diagnosis of bronchiectasis when I was 17 years old. Back in the 70’s and early 80’s the convention was to stay away from too many x-rays. My first chest x-ray revealed a piece to the puzzle that would eventually become my diagnosis of Primary Ciliary Dyskinesia

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Categories: Quality of Life

Key points from NYU NTM Patient Education Seminar, QOL Segment presented by Betsy Glaeser

Posted on April 27, 2016   |   
Author: Delia   |   
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This blog post was written by Katie Keating, RN, MS (patient advocate).

The impact of a chronic illness affects each and every aspect of your life on a daily basis. More research is now being done on how NTM affects the quality of our lives. NYU Medical Center recently held a patient conference and I would like to summarize the key points of a patient speaker, Betsy Glaeser, Leader, NY NTM Support Group.

  • "She always looked good"- most people look at us and feel

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Categories: Quality of Life

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