‘Stay Strong and Never Hide Your Illness’

Ann Reynoso avatar

by Ann Reynoso |

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I will celebrate my two-year diagnosis anniversary on Dec. 11. On this day, which changed my life forever, I was finally diagnosed with lymphocytic interstitial pneumonia.

My head was spinning when I heard these words. What is this illness? I wondered. Is it curable? It must be curable, I thought. After all, it has the word pneumonia in it. But to my surprise, pneumonia is not what this disease is all about.

The first time I really struggled to catch my breath was in the spring of 2016. That was what I now believe to be my first warning. I couldn’t catch my breath while doing any type of activity.

I developed a chronic cough that worried me because it stayed with me all day, every day. I couldn’t eat, drink, sleep, or speak without having a coughing fit. I let this go on for about six months before I decided to seek help.

I began to worry that perhaps it was “all in my head.” I noticed that I no longer had a full appetite, and it showed with rapid weight loss. I was afraid to go anywhere due to my coughing. It became so bad that I felt myself drawing further and further away from any form of socializing.

My first visit to a pulmonologist made me nervous. For some reason, I couldn’t seem to rule out lung cancer. I was directed to obtain a CT scan of my lungs, but according to the doctor, the results were good. In the meantime, my cough worsened, preventing me from eating well. My husband and daughter noticed the fast and continuous weight loss in the short months since I began this journey.

Fortunately, in the fall of 2017, my daughter convinced me that finding another pulmonary specialist would be the next step in obtaining answers to this mystery illness. Then, in February 2019, I finally glimpsed my future.

I was worried the doctor wouldn’t believe my struggle. I was so uncertain about my mental state by that time. Are these symptoms real? Am I going through some type of mental breakdown and this is how my body is reacting?

I was put through a series of tests. I had the six-minute walking test, which I couldn’t finish because my oxygen levels dropped dramatically, then the spirometry test, an electrocardiogram, and finally a visit with the doctor.

I explained that perhaps all of what was happening to me was “just in my head.”

He laughed and said, “This is not all in your head. What you feel is real.”

He explained to me that because there are a vast number of lung diseases, he wanted to continue with more tests, including a series of X-rays and CT scans, and a bronchoscopy.

He found in the CT scans that there might be some scarring in my lungs. He wanted to be able to give my illness a name, so he referred me to a thoracic surgeon to conduct a thoracoscopy with a biopsy. The wait for those results seemed like forever. I couldn’t sleep the night before. Morbid thoughts raced through my mind. What if it is lung cancer?

I had never felt so detached from my body as I did on the morning of my appointment. When I heard my name called to see the surgeon, it felt as if my feet were sternly planted on the floor. I couldn’t move. My daughter had to take my hand and lead the way into the examining room.

The surgeon entered and I felt faint, but I had to pull myself together. I needed to know what I was facing. What would my journey be?

According to the doctor, I have lymphocytic interstitial pneumonia. In other words, I have scarring of the bilateral lower lungs, which also is known as pulmonary fibrosis, chronic interstitial inflammation, collagen vascular disease, and hypersensitivity pneumonitis.

I finally have a name for this illness!

Wait. What does this mean? Am I dying?

The doctor tried to explain, but I interrupted: “Am I dying?”

I never received a definitive answer to that question, and I don’t think I really want one. For now, this is my journey. But I am not alone. My family is with me, along with countless others on the same journey as I am.

I take each day as it comes and do my best to stay positive, strong, and faithful. Every day, I remember the words my mother told me: “Stay strong and never hide your illness.”

***

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

Terran avatar

Terran

Thank you for sharing! I also have LIP (almost five years now).

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Ann Reynoso avatar

Ann Reynoso

Hi Terran. I was diagnosed in 2019, but had symptoms since 2016. It took a while for doctors to finally give me a diagnosis. I have been on oxygen before I was officially diagnosed. I used to be on oxygen 24/7, but since I have been on Ofev (since February 2021), I can actually go without using my oxygen for several hours as long as I am not exerting myself. Stay strong!

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Catherine Berntsen avatar

Catherine Berntsen

I continue to follow-up with the Pulmonary Fibrosis Foundation and the research being done. Stories of other patient's experience are helpful in processing my own and my husband's experience. He was diagnosed in October 2018 and was on an Inogen by May 2019. By November 2019 he required 24 hour oxygen at home. He died from his illness on Jan 4, 2021. He was experiencing shortness of breath on a trip to the national parks in the west in 2015 which was probably the start of it. We attributed his symptoms to the altitude in New Mexico, Arizona, Wyoming. I have asthma and was not in any distress. It is a very frustrating disease; no specific cause found and no effective treatment. He was on Esbriet for one year.

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Ann Reynoso avatar

Ann Reynoso

Catherine, I am sorry to hear about your loss. I too, am no stranger to loss. I lost my mother from Covid-19 in July of 2020. I sometimes get so frustrated with this disease, but I can't let it deny me the best I can get out of life. I will keep you in my prayers.

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David avatar

David

Ann same thing happened to me Exactly how are you making out now pretty well get this disease the same time as you

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Ann Reynoso avatar

Ann Reynoso

Hi David. I am doing well for now. Pulmonologist my disease has remained stable for the past two months. I have been taking Ofev since February 2021 now and seem to be responding well. Remember to stay positive and always be in charge of your health.

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Randall Thornton avatar

Randall Thornton

I know how you felt at that time, I felt the same when I was told I had a disease called IPF. Like most people, didn't know what in the heck it was. Then the boom started to hit. I was told and still didn't register. After an explanation and the look on my face of complete blank I finally was able to speak. Then the final boom hit was when I was told uncureable, no drugs to cure it, maybe slow it down. I asked how long I had and when told 2-5, that is when I started bawling. I am feeling okay, just don't do what I used to. I am hoping and praying I can outlive the prediction. You keep up your fortiude and we will go far.

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Ann Reynoso avatar

Ann Reynoso

Thank you for commenting. Being positive always gives me strength. I pray staying positive continues to give you strength as well.

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