April A., KS

In the fall of 2018 I started to become short of breath and developed a cough. I was a healthy 43 year old and on no medication. I had only been to the hospital to have my 2 children.

A primary care physician and a pulmonologist ordered many tests, inhalers, chest x-ray, CT scan and a bronchoscopy. But nothing could be found.

I finally had to be admitted to the hospital for 15 days because my oxygen levels were very low. I was placed on IV antibiotics and IV steroids and finally the decision to undergo a right thoracoscopy with wedge resection became necessary. My biopsies were sent to Mayo Clinic. I was discharged home on several medications and oxygen.

At the time I had been a practicing Respiratory Therapist for 20+ years so I was well versed in the health care system. I was finally diagnosed with interstitial lung disease/pulmonary fibrosis and the autoimmune disease anti-synthetase syndrome.

I never returned to work and have been on social security disability since 2019. I went through pulmonary rehab and began the local hospital fitness program for cardiac and pulmonary patients. I was able to wean off oxygen for a few months but remained on other medications and high dose steroids.

I also have had blood pressure since my diagnosis and have never been able to wean off medication. I developed cataracts in both eyes and had them surgically corrected in 2026.

In May of 2020 I had an unfortunate exacerbation of my condition and was hospitalized once again. This time I was on high flow oxygen at 12 L and was so weak and short of breath that I could only walk to the bathroom in my home.

Activities of daily living were very difficult. I was unable to drive for almost a year. I received a blood transfusion that summer.

I completed a double length pulmonary rehab program once again and eventually was able to wean my oxygen back down to 1-2 L over the course of 2 years. I remain on oxygen today.

I developed diabetes as a result of high dose steroids. I was on insulin and metformin. After several years I was able to wean off the steroids and eventually became a non diabetic without medication.

I received a portable oxygen concentrator in 2023 which has been very beneficial. Prior to that I relied on the heavy metal and awkward green oxygen tanks which limited my mobility. Since receiving the portable concentrator I have been able to fly a few times.

High humidity or extreme cold affects my breathing and I cough quite frequently. I have tooth decay from my chronic use of cough drops. I can not be around anyone that smokes and I have never smoked.

I am faithful in getting my vaccinations, however I have to time them around my autoimmune infusions that I receive every 6 months. Because of my age (46 at the time) I was not one of the first to receive the covid vaccine in 2021 even though I met all of the other criteria.

I do receive covid and flu vaccines every year now and I am up to date with pneumonia and shingles.

I continue to work out at the hospital fitness program 3 days a week with the treadmill and weights. I am still short of breath and cough every day. I am limited with how far I can walk and can not lift, carry and walk very far.

I experience chronic pain in my limbs and joints. I am a candidate for a double lung transplant and it will eventually become necessary to sustain life.

I have 2 teenagers at home and there are no lung transplant centers in the Kansas City area, so I have opted to delay transplant consultation until my children are older or my condition becomes more critical. I am stable for me for now.

I see my primary physician, 2 pulmonologists and a rheumatologist regularly. I have tried several pulmonary fibrosis medications to help slow the progression of the disease.

I have an amazing support system of family and friends and my church. I am grateful that I am able to attend many of my kids' school activities and I am able to pace my schedule so I rest in between them.