Linda Esposito is my next guest for the Chronic Illness Support Guest Blog! You can find information Linda has provided about bronchiectasis as well as some of her journey. We hope you find this information helpful in your journey with bronchiectasis and/or chronic illness.
Illness: Bronchiectasis (BE)
Tell us about yourself, what illness we are talking about today (definition, symptoms, etc.) and when you were diagnosed, how, what led to diagnosis, etc.
Bronchiectasis (pronounced bron-key-eck-ta-sis) also known as BE, is the scarring of the bronchial tubes in the lungs. This scarring causes the airway passages to become enlarged, stretched out, and ineffective in clearing mucus. Over time, these pockets fill with harmful bacteria, viruses and other pathogens that can cause more pulmonary disease.
Some people get BE from underlying genetic diseases such as Cystic Fibrosis, Alpha-1 Antitrypsin Deficiency (A1AD) or Primary Ciliary Dyskinesia (PCD). Others acquire it from COPD as well as bacterial and viral illnesses. And, approximately forty percent of those with BE have no idea where they got it. I’m afraid that post-COVID, we are going to see a worldwide increase in the number of people who suffer from this chronic illness.
My pulmonologist thinks that I probably got BE from gardening! I now live in New York City but from 2004-2012, I lived in Woodstock, New York. I had a huge flower garden and spread a lot of mulch. MAC, a common bacteria that is prevalent in soil, found its way into my lungs. With bronchiectasis and MAC, it is a matter of which came first the chicken or the egg. But regardless, together they can wreak havoc on your lungs.
How long did you suffer with symptoms before you were diagnosed?
In 2017 I got a cold and then had a lingering cough. I didn’t worry about it much, but after a couple of months, it was interfering with my life. I wasn’t sleeping well, and I was afraid to go to the movies or eat out because of my annoying cough. I went to my primary care doctor and she thought it might be acid reflux. She gave me medication to reduce my stomach acid so that it wouldn’t come up my throat and cause me to cough.
I also made some lifestyle modifications to prevent reflux including changing my diet, not eating before bedtime and sleeping with my head elevated. Nothing worked and when I finally returned to my doctor in the fall of 2018, she ordered a CT Scan. The scan showed bronchiectasis and the probability of MAC bacteria. I then had a bronchoscopy, a diagnostic test whereby a camera is inserted into your bronchi and samples of mucus are taken for analysis.
What treatments have you tried? Did they help? Did you have side effects? Etc.
MAC is a very slow growing bacteria and I had to wait two months for my tests to come back. The results were positive for MAC and my doctor gave me an airway clearance device called an Aerobika. This device doesn’t dispense any medication but instead creates vibrations in your chest to help break up mucus so that you can expectorate it. I used it but I wasn’t able to bring up much. The good news is that my cough went away! I was thrilled to be able to go to the movies and exercise classes again without having to worry about disturbing others with my cough.
I stopped using the Aerobika thinking that because my cough disappeared, my problem was resolved. Three months later when I had another CT scan, I was disheartened to hear that my bronchiectasis had not improved, in fact it had worsened a bit.
At that point the doctor explained that I should not have stopped doing airway clearance. My condition was permanent and trying to get mucus out of my lungs was going to be a lifelong need. He suggested that we try to get rid of the MAC by starting three different antibiotics for a period of at least a year. I was shocked that he was suggesting such a harsh treatment when I was feeling so good. When he further stated that even if we were to knock out the MAC, there was a fifty percent chance that it would return, I said that I would think about it.
I knew how sick I get on antibiotics and could not imagine taking three of them for a year with possible side effects being nausea, ringing in the ears, hearing loss, vision impairment and anorexia. Fortunately, I found a support group in New York City and started attending meetings. It was interesting to see that many of the attendees were over sixty, just like me. They often talked about nebulizing saline (breathing in a salt mist) along with using the Aerobika. My doctor never mentioned nebulizing so I emailed him and asked for a prescription. Wow--what a game-changer! Finally, I was able to cough up some of the stuff in my lungs. I read more and more and added other airway clearance practices including postural drainage and lots of stretching and exercise.
I decided that I needed to find a new doctor and got a couple of recommendations from the support group. The doctor I chose is the top in her field and she immediately sent me for tests to see if I had any allergies and whether I had any underlying genetic conditions. Everything came back negative and because I was feeling great, we decided on a plan of regular monitoring without any medication. I also took it upon myself to research supportive alternative medicine options. I discovered energy work called Jin Shin Jyutsu and do a self-care routine everyday to boost my immunity and decrease inflammation in my body. I also meditate and have improved my sleeping habits so that I get better rest.
What are five must haves that you can’t live without that help you cope with your chronic illness (Ex. book to read, coloring book, heating pad, bath, etc.)?
The five must-haves that I can’t live without are my Aerobika and nebulizing devices, a good movie to watch while doing my airway clearance, comfy sneakers for all the exercise I do and a book to read before going to bed.
Do you have other illnesses? If so, would you like to mention them? What are they?
I also have Irritable Bowel Syndrome and find that the breathing and relaxation exercises that help me with bronchiectasis, also help with my digestive issues.
What is something you wish you would have known when you were diagnosed?
That it is chronic but along with seeing a medical team, BE can be managed with breathing practices, exercise, airway clearance, meditation, rest, good sleep and a sense of humor.
How does it affect your daily life?
I have to prioritize exercise and airway clearance on a daily basis. I try to exercise in the morning, do clearance in the afternoon and then sometimes a second time in the evening. I also eat a mainly vegetarian diet with very few prepared or processed foods, so there is a lot of planning, shopping and cooking. I don’t really enjoy cooking but, because I am so fussy about what I eat, I am trying to embrace it. I have a lot of energy in the morning so often that is when I cook.
I take certain precautions because of my MAC infection. It is generally believed that additional exposure to MAC in water should be limited. This means I need to boil drinking water, take very quick showers, change showerheads monthly and stay out of hot tubs and pools. I am currently sheltering in place in California and the temperatures here in the desert have been hovering around a hundred degrees. The pool at the end of our street looks so inviting but I’m trying to not take a plunge!
How are you doing now with symptoms etc.?
Really well. I always led a healthy lifestyle but I have fine-tuned it. I feel great, have lots of energy and am positive-minded.
Is there any other information you would like us to know about your illness?
Some people with bronchiectasis are under the assumption that it is curable. It is not. Scarred lungs are permanent. But early detection and a commitment to self-care can make a world of difference.
What piece of advice do you want to give readers?
There are many people with advanced cases of BE because in the past, the medical community was not well-informed about the condition. Now that there is more physician education and an increase in the use of CT scans (bronchiectasis is rarely picked up on x-rays), people are being diagnosed sooner. When we are diagnosed early on, we have the possibility of slowing the progression of the disease with daily management.
People who have COPD, asthma and genetic lung diseases might want to ask their doctors about bronchiectasis and see if a CT scan could be ordered. It is also important to have the scan read by expert radiologists as BE is often missed. In other words, advocate for your lung health!
How can someone show support (awareness colors/ribbons, etc.)?
I believe the ribbon is blue.
How can readers connect with you (Ex. Instagram, Twitter, Facebook, Website, etc.)?
Guest Chronic Illness Blog coming soon! Guests will be asked to provide information about their illness and must haves while experiencing pain and other symptoms.
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.Write something about yourself. No need to be fancy, just an overview.