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Archive: March 2020

Coronavirus and the NTM Patient

Posted on March 30, 2020   |   
Author: Gretchen   |   
0 Comments   |   
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Do you find yourself living in great fear since the outbreak of the corona virus?

Fear can paralyze us and create anxiety when we feel out of control. But we can also find an opportunity to practice letting go of the control we think we have. Awareness of our limits in the here and now is the antidote. I believe that we must accept the things we cannot change. And, we must change the things we can. For example, infection-control procedures in your home, getting involved in diversional activities, helping others, if possible, instead of focusing on all the media and news.

Ask yourself what is of utmost importance at this moment in time, and then prioritize the tasks.

Below are several suggestions to assist you throughout this challenging time:

  • Take one day at a time. If you haven’t been doing airway clearance/diaphragmatic breathing exercise, this might be the time to consider it, if advised by a healthcare provider. I have taken out my flute and am playing it twice a day. I also do basic yoga poses. Walking is a nice way to get exercise, so long as you do not come in contact with others. Practice meditation, mindfulness. Below are links to a few apps/devices that you may find useful during this time.
  • Get up and get dressed as you were going out.
  • Communicate to family and friends how very important it is to you that they work with you to stay well and keep you well; enlist their support. Try to reduce your exposure to the virus-explain your risk to family and friends. Explain to them that there is no cure at the present moment and it can be very dangerous to those with underlying lung conditions like NTM.  We must be hyper vigilant since the symptoms may not show up for days after exposure to the coronavirus; it can live on surfaces for hours. Younger people are now getting sick with the coronavirus; it just does not impact people with lung disorders and the elderly.
  • Speak openly and honestly with family about caregiving scenarios and detailed plans in the event that you or one of your family members or you becomes infected. Designate a room for the sick person.
  • Do not touch eyes, ears, nose, and mouth.
  • In public — if you must go out to a store, bring your own hand sanitizer. Purell in a dispenser is no good if the store doesn’t have a box of tissues next to it to push the pump with. Touching the top of the Clorox disinfecting wipes is not good either. Carry tissues with you and use a tissue to open the container. The virus can live for several hours on most surfaces.
  • Pubic bathrooms — Do not touch a public soap dispenser without a tissue or piece of toilet paper. Use a paper towel or piece of toilet paper to flush the toilet, to turn off water, and to get paper towels from the dispenser.
  • Home bathroom — Use your own hand towel in the bathroom as you would if family members were sick with the flu.
  • Home kitchen — Have your own kitchen towel to touch appliances such as the sink, microwave, oven, or refrigerator that other family members use, especially if other family members are still going out to work and or to the grocery or drug store. Be mindful of family community condiments, such as salt/pepper shakers, ketchup. Also, kitchen drawer knobs, light switch, etc.
  • Home doorknobs — Use a paper towel, towel, or Clorox-type disinfecting wipe, Sani-wipes to open them.
  • Clean all other possible contact surface areas regularly.
  • Bedroom — if your husband/wife/significant other is still going to work, ask your partner to wash and sanitize hands and change clothing upon coming home. You may even want to suggest that he/her take a shower upon arriving home from work. Wash clothes in hot water immediately if possible.
  • Order supplies — If possible, consider having on hand a 90-day supply of meds, such as nebulizers, nebulizer tubing, masks, .3%normal saline, alcohol wipes, thermometer, oximeter, mucinex, Tylenol.

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Categories: Awareness

COVID-19, COPD and You: Important Strategies from Leading Medical Experts on Managing Your Health

Posted on March 18, 2020   |   
Author: Gretchen   |   
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COVID-19, COPD and You: Important Strategies from Leading Medical Experts on Managing Your Health

The COPD Foundation wants you to know you are not alone during this time.

On March 17th, we hosted a webinar that provided updated medical information about managing your chronic obstructive pulmonary disease during the COVID-19 (Coronavirus) pandemic.

This webinar featured leading medical and public health experts including Dr. Josh Sharfstein from the Johns Hopkins Bloomberg School of Public Health, Dr. Robert Wise of Johns Hopkins University School of Medicine and Dr. Byron Thomashow from Columbia University/New York-Presbyterian Hospital, along with COPD Foundation staff members, Stephanie Williams and Jamie Sullivan.

The speakers addressed the most common questions we received about the coronavirus and COVID-19, including what we know and don't know about the disease, signs, and symptoms people with COPD should watch, practical action to prevent the disease, tips for maintaining your emotional well-being and resources for credible information.

You can now access the recording of the webinar from your computer, tablet or smartphone. You will be asked to enter your name and email address to join. If you are unable to access the recording on your device, please contact statecaptains@copdfoundation.org for assistance.

Join us in learning how we can face this crisis together.

Access the recording here: HTTPS://ATTENDEE.GOTOWEBINAR.COM/RECORDING/8346133687330994690

Sincerely,
The COPD Foundation Team

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Tags: COVID-19
Categories: Awareness

My Journey with Lung Disease: Referral and Initial Treatment

Posted on March 04, 2020   |   
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So I take my new IV machine home, along with two types intravenous medication, one to be injected twice daily through the machine and the other delivered through pressurized bottles not needing to go through the IV machine three times weekly. In addition, I need to take 500 mg of an oral medication daily. The long list of potential side effects include all sorts of gastro-intestinal discomfort and potential hearing loss. Through my own research with Dr. Google, the first intravenous medication was the hot new drug that stood the best chance of success, so I was happy (in a weird, medical sort of way) that the doctor had chosen to give me the cutting edge medicine. The second intraveneous medicine is an old school antibiotic not used very often in modern times, but it is the most effective medicine with NTM, from what I have seen so far. It is also the medicine that directly threatens my hearing. I do remember the doctor saying I would need a baseline hearing tests, and follow up tests every few months. Essentially, he gave me a choice between hearing and breathing.

With the Peripherally Inserted Central Catheter (PICC) line installed, machine plugged in, bathroom taken over by cases of medicine and supplies, I am ready to finally fight back against this crazy disease that has plagued me for three years. I am determined to take every dose of medicine and follow every bit of advice. Within a week, I find that the hot new medicine really throws my digestive system for a loop. I am begging the doctor for anti-nausea medicine and spending lots of time in the bathroom. Let's just say that food doesn't spend a lot of time inside of me. The course of treatment for this medication is eight weeks, so I perservere.

When you have a PICC line, you see the doctor every week, plus have weekly bandage changes. The place where the PICC line goes into your body needs to be kept dry and sterile, and requires daily attention. The PICC line needs to be flushed daily with saline, even if you are not taking any medicine. Due to the toxicity of the drugs, I also had twice weekly blood tests. Essentially, half of my waking hours involved dealing with medicine, doctors, machines, pharmacies, and bathrooms.

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Categories: Awareness

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