Updated: Jul 19, 2020
TBP via robotic surgery on 10/19/18 at NYPresbyterian/Weill Cornell Campus NY, NY
Eugene Shostak, Interventional Pulmonologist and Benjamin Lee, Thoracic Surgeon
Until I was in my mid 40’s, I felt I was relatively healthy, working full time as an RN and generally not paying that close attention to my own health as I was busy living life, working, raising a family. As a child I frequently had ear infections, sinus infections and colds that often became bronchitis, but I was never diagnosed with asthma or any other serious respiratory issues. I do recall being the child who, if I had a cold, it was sure to become bronchitis and then pneumonia.
I began to have frequent and serious sinus, ear and respiratory infections, including pneumonia when in my 40s. On one occasion, I developed a common swimmers’s ear while on a beach vacation. Within hours, I became septic. This prompted me to look further into why I was becoming very ill so often. I had sinus infections that seemed to last for months. I found and consulted a “sinus guru” whose specialty is sinus treatment and is board certified in Allergy/Immunology. He also referred me for sinus surgery, actually a total of 3 surgeries. Due to the type of cultures that they found, they had strong suspicions that my immune system was involved because the type of infections I was having are opportunistic, or more common in patients who are on chemo, have cystic fibrosis or are otherwise immune compromised.
This led to a series of studies that confirmed a Primary Immune Deficiency. This means that I do not make antibodies to fight off bacterial or fungal infections. I do not hold a response to most vaccines, because I do not make the necessary antibodies. As a result, I began treatment with IV Immunoglobulin(IVIG) , every 3 weeks, which is essentially antibody-rich plasma collected from donations. Other people’s immunity is transferred to me. The treatment is very effective, but I am still prone to respiratory infections as well as opportunistic infections that donors have not developed antibodies against.
Somewhere along the way I was told that I have asthma as well, so was started on oral and inhaled meds as well as prednisone when needed. I was fairly stable on this regime until around my 60thbirthday when I developed a pneumonia that did not seem to respond to antibiotics. It was a difficult recovery and I never really felt like I was over it. I was fatigued, wheezing, had a terrible cough and shortness of breath with very little exertion. Red Flag #1. The chest x-ray and cultures were coming back negative, or free of infection, but I was still wheezing, coughing and generally not breathing well.
I was then referred to a local pulmonologist who tried yet another round of steroids and antibiotics to no avail. I was finally referred to the Pulmonary Division of a regional Medical College. On the first visit I was seen by a team including an Attending, a third year Resident and a second year Fellow in Pulmonolgy. They all told me that my history was unusual in that asthma does not usually first present in adulthood. It will sometimes return after childhood asthma but they all agreed that it didn’t seem likely that I had asthma. This was Red Flag #2. I then had my first bronchoscopy and was told that it appeared that I had severe infection, however all of the cultures taken during that procedure came back negative. The bronch report stated “significant dynamic airway compression was noted.” Red Flag #3