Patients living with any type of compromised immune system or respiratory disease understand implicitly the importance of staying away from germs. The caveat is that despite our chronic illness, patients still have to run errands, travel, and be in public so the threat of falling ill with some type of respiratory virus or bacteria is never far from our minds. At least, it is a very real fear for me as a patient living with idiopathic pulmonary fibrosis (IPF), a fatal and life-threatening lung disease.

Part of this fear is embedded in my memory following an acute exacerbation two years ago, when catching a respiratory virus nearly cost me my life. I tried to push through a small cough, which then escalated into a high fever and bacterial infection in my lungs. I’ll never forget the day both my lungs collapsed and I was intubated and placed in the intensive care unit (ICU).

I don’t remember much of the days following as I was in and out of sedation, but I still get emotional thinking of everything I endured during that hospitalization, which was the longest one I’ve had thus far. It took months of physical rehabilitation and various therapies to gain my strength back as I became very weak from lying in a hospital bed.

I am confident that this experience is the main culprit of my fear behind catching a respiratory virus again. As a result, I avoid large crowds of people, especially during cold and flu season, and I stay away from sick friends, family members and colleagues.

While many patients living with IPF know the importance of remaining virus and germ free, others who are newly diagnosed with this disease may not understand the seriousness of catching a virus. Unfortunately, IPF is an unpredictable disease and once mixed with a respiratory bug, it can escalate and become serious very quickly. I hope sharing my experience with you will help others realize the importance of keeping yourself healthy as a patient living with IPF.

Despite being fearful of germs, I am also realistic about the fact that I can’t always avoid coming into contact with viruses or bacteria. However, as a patient who has a compromised immune system and a lung disease, I take my role in keeping myself as healthy as possible very seriously. I never want to experience an exacerbation again, as I lost a significant percentage of lung function following that event.

In order to keep myself as healthy as possible, I follow these four important steps on a regular basis:

1. Inform others of my weak immune system

When I was first diagnosed with IPF in April 2016, I was very shy and cautious about telling my story. As a young adult with a very active social life, the last thing I wanted was to be different from my peers. However, since that acute exacerbation, I now take it upon myself to tell people about my lung condition, and that as a result of the medications, my immune system is very compromised.

Since I work with children and families, I even obtained permission at my workplace to ask ahead of any home visits if there are smokers in the home, or if anyone has recently been sick. While the conversation can become awkward, I’d much prefer this to walking into an environment where folks are sick with the flu or a respiratory virus. I also informed my colleagues, and asked them to be as diligent as possible with hand washing and keeping their distance when they or their children are sick. Everyone has been very respectful of this, and I am grateful for that.

An important thing to note when asking others to help you remain healthy is putting the action back on yourself. What I mean by this is, I don’t ask people to stay home from work while they are sick; instead I ask them to let me know if they are ill and I take the proper precautions to protect myself. This might mean I wear a mask, choose to work from home, or take a sick day. By putting the onus on me to do what is right for my health when someone is ill, it takes the expectation away from others. This has eased the pressure some of my colleagues feel when they are sick but need to be at work.

2. Don’t let others handle your things

Carrying my oxygen and other heavy bags is one of the most helpful ways others can assist me as I become breathless on a regular basis while trying to carry more than my small purse. However, when others handle our personal belongings, it is very important to wipe them down afterwards. 

Oftentimes people are carrying germs they don’t know about, and despite their kind intention of helping us, those germs can be transported to our personal items. Personally, I am terrible with handing others my phone to show them a funny video or photos of the weekend I just had. Did you know that passing your phone around is one of the easiest ways to spread germs? Sometimes after other’s handle my phone or portable oxygen concentrator (POC) in particular, I wipe them down and explain that it is just in an effort to avoid catching any germs.

3. Wear a mask

It might take some time to get used to this, but wearing a hospital-grade (or higher) mask to protect your lungs is very beneficial. This is especially important in large, crowded areas such as the mall, airports or indoor sporting or concert venues. This was also something very difficult to get used to for me, but after my exacerbation, I never want to risk getting that sick again. I use a company calledVogmask, which has worked really well for me over the years.

4. Use hand sanitizer

While this may seem like common sense, I recently had a conversation with my transplant coordinator in preparation for flying to Hawaii this September. She shared with me that the alcohol content in hospital hand sanitizers is significantly stronger than those bought on the shelf. While I don’t have the research to support this readily available, I trust her knowledge based on her experience and education. She also shared with me that scented hand-sanitizers are not recommended when it comes to anti-bacterial properties. If you can, especially during cold and flu season, obtain bottles of hand-sanitizer from the hospital or purchase a similar strength bottle for your personal use and apply liberally. This is one of your best defenses against respiratory viruses and bacteria.

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From one patient to another, I hope taking these important steps helps you avoid contracting respiratory viruses, and enable you to stay as healthy as possible while living with IPF. Please share with your friends!

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After being diagnosed with idiopathic pulmonary fibrosis (IPF) in April 2016, Charlene Marshall has made it her mission to support, educate, and share her experience of living with a chronic lung disease as a young adult in an effort to help others. She enjoys spending time at her family cottage, traveling the world, and all kinds of do-it-yourself (DIY) crafting projects. Charlene resides in Canada and has discovered a passion for writing in the past few years—something she never anticipated would be therapeutic for her—and building new friendships or offering support to others.

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