Re-entering the outside world as a bronchiectasis NTM patient

Posted on June 30, 2020   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

It has been a long, challenging spring since the news of a quarantine hit in early March. The coronavirus outbreak was a huge adjustment for most of the world. For many of us, however, the change was not as drastic, and we did not have to make too many adjustments. People with NTM and bronchiectasis have been practicing infection-control measures for years and faced aloneness and loneliness from social isolation long before the pandemic hit. Many of us have dealt with the challenges of living with an invisible disease. Many never realized, dealt with or grieved the multiple losses we faced — career, financial, and social life losses due to the onset of a chronic lung disorder.

The general public is now grieving the abrupt changes and anticipatory modifications in their lives. This will hopefully be a short period of time for them, in comparison to others living in semi quarantine for life.

As part of our diagnosis, some of us have been left to deal with our losses silently and adapt on our own. Since most did not understand this invisible disorder, I was told to “put your big-girl pants on” when I was first diagnosed. Now that the general public has experienced the loss of social interaction because of living in quarantine, they may now have insight into what patients with invisible chronic disorders such as ours have been dealing with for some time. Give yourself permission: it is okay, even beneficial, to take the time to grieve for such loss of life as “normal” and provide yourself the needed self-care.

I was fortunate to find the New York City support group a year after my symptoms began. We shared our experiences and found that many doctors did not inquire about our emotional wellbeing at that time; many patients just went home feeling isolated. No real pity was offered by former coworkers, friends, and family. Easy shame was given and associated with a chronic invisible illness. Shame may lead to depression as well as lack of hope for some patients.

How are we going to go forward from here? We are witnessing people literally throwing their masks away and behaving as if nothing ever happened. They have no idea what it is like to live daily with a chronic lung condition and the impact it may have on the individual’s life. Social distancing is a sacrifice, yes, but we help one to help another.

I do not feel comfortable taking a risk at this point of time. I will continue wearing a mask; I will take every infection-control precaution possible until we have more medications on board and an effective vaccination.

Do not follow the crowd for the collective good of all — please follow the science and public health officials. Remind others that they have no idea whether or not they are a carrier or if they have touched a surface with COVID-19. Each person is different and the symptoms you may feel may vary from others, so it is important to protect yourself. We have been through enough already. We don’t know enough about our immune response and COVID-19 at this time.

Seemingly "normal” tasks have become more difficult. It can be a hassle to go food shopping or even on a short trip to the mall these days. Yes, it is getting old already, but we must continue to practice serious precautions until we get to the other side. Run errands with the extra layer of precaution: mask, gloves, cleaning off your credit card after using it, etc. Try to minimize exposure. Pick and choose what activities are most important. Order online when you can. Carry a small plastic bag of wipes with you wherever you go. Being vigilant requires a lot more steps and can be stressful since we have to be so conscientious of every move we make.

Be creative with your own self-care for the next 6 to 12 months until a vaccination is widely available. There is opportunity within these challenging times. It can be a time of emotional growth, a transformation within society. Develop new routines. You could find something, such as a new hobby to build into your day-to-day life. Maybe use this time to reinvent yourself. Enlist the assistance of someone who has time to help you start something new. Use the time wisely to plan whatever you want to accomplish on your bucket list.

Visit friends, picnic in a park or someone’s yard with tables six feet apart. A sneeze or cough can change your life. It may not be possible to give a hug to an extended family member, but technology makes it possible to check in with friends and loved ones you are unable to see via online video platforms. These platforms don’t completely fill the void for many people; we all have a longing to belong and human touch makes us feel more connected. I know, I am a big hugger, and this will be difficult for me going forward. We can only see the eyes of others when masks are on and we are socially distancing; it is so much less personal. Many don’t offer eye smiles back.

Keep up with physical fitness, a virtual exercise classes — the more active you are capable of, the better you will be. Get out for a short walk on a daily basis if possible. (1) (2) Sleeping well at night is important for your immune system. Gratitude journaling helps boost positive thoughts. Try to get your Vitamin D from sunshine, 20 minutes per day.

I will continue to do telehealth visits whenever needed and possible. Telehealth saves us potential exposure to other sick patients in the waiting room/exam rooms, never mind the possible COVID patient. Keep in mind, most telehealth programs require you to check-in 15 minutes prior to your scheduled appointment in order to update personal information and answer COVID-19 related questionnaires.

Israel-based medical device company, Tyto Care, has announced that its digital stethoscope has been granted US Food and Drug Administration (FDA) clearance. The stethoscope device will be part of Tyto Care’s advanced set of examination tools now being introduced to the telehealth arena. (4)

When at the doctor’s office, it’s important to take measures that will reduce exposure to germs. Some examples are using a paper towel to turn off the bathroom faucet, using a tissue for the elevator buttons and door handles. Below are some links to CDC resources on infection control measures. It may also be helpful to inquire about your doctors’ office cleaning policies- the benefits at a doctor’s office must outweigh the risks involved. I will practice any prescribed or over-the-counter remedy first before plunging into an elective procedure. That is not to say you should delay any necessary diagnostic testing and procedures.

This is another wakeup call for all! Again, an opportunity within a crisis. Let us support one another on the road ahead to make it the best possible under the current circumstances. I will feel safe when adequate contact testing is available, effective medications are available, and a vaccination is approved. Hopefully, we will look back a few years from now and say, “we made it through the COVID-19 challenge as well!” We must believe that we will conquer this virus! Veni, Vidi, Vichi, We came, we saw, we conquered!!! We already had experience with infection control and quarantine. We will be more grateful than ever to breathe, to live. Wishing you the best!

The COPD Foundation advises that before you make any changes to your medication or therapies that you first consult with your doctor.