As told to Nicole Audrey Spector
I was in my mid-40s and working as an elementary school teacher in the 1990s when I developed asthma and allergy symptoms. Over-the-counter allergy medication relieved my symptoms. But about five years later, the symptoms became more severe. I was very tired and had the frightening feeling that I wasn’t getting enough air when I breathed in. My GP sent me to an ENT doctor who examined my nose and said I had a sinus infection. He prescribed me steroids and antibiotics. I took it and felt good for a while.
A few months later, I was at work and felt a flood of allergy symptoms coming on. I took an oral decongestant at lunch and returned to work, struggling throughout the day as my symptoms worsened. When I got home, my eyes were red and my nose was streaming. Again I had the scary feeling that I wasn’t getting enough air. I have booked another visit to the ENT.
This time the ENT doctor not only prescribed antibiotics, but also an inhaler to treat asthma. The inhaler that I always carried with me provided breathing relief when needed. For several years I was doing pretty well. I rarely had to see my ENT doctor. Until I had another episode – one that changed everything.
After going wine tasting on a hot day and not drinking enough fluids, I suffered a severe allergy attack. My nose was very stuffy and I realized I had a sinus infection. The ENT doctor examined me and used a microscope to discover something interesting in my nose: nasal polyps. These can make life incredibly unpleasant. They block sinus drainage and cause sinus infections. Polyps can also make breathing difficult and affect the sense of smell.
To shrink the polyps I could go back on steroids, possibly long-term. Living with the various side effects of steroids for who knows how long was not something I wanted. My doctor didn’t want that either. So we discussed another option: a septoplasty to correct my deviated septum and, along with it, surgery to remove the nasal polyps.
I performed the operation in March 2009. Everything went smoothly… until I got home to recover. I took the strong paracetamol medication that the doctor had prescribed for the post-operative discomfort. I felt violently sick and vomited.
I called my doctor who told me to stop taking the medication. At a follow-up appointment shortly afterwards, he explained to me that I suffered from Samter’s triad. Nowadays, this is more commonly referred to as aspirin-exacerbated respiratory disease (AERD). AERD is a chronic condition that causes asthma, sinus infections, and recurrent nasal polyps.
It was a groundbreaking diagnosis. It revealed the mystery of what had been going on with me all these years. But it was also annoying. I knew that the nasal polyps would return and that further surgery would be necessary in the future. My doctor estimated that the nasal polyps would grow back within 10 years. What was also worrying was that my sense of smell had greatly diminished after the operation. Sometimes it wasn’t there at all.
I spent a lot of time researching AERD. I read stories about other people living with AERD and how they coped with the disease. It was helpful to not only stay up to date on all the medical research, but also to be involved in a community that has the same health issues as me.
Life went on and with it a back and forth of nasal sprays and occasional and highly unwanted steroid treatments. Thirteen years later, in January 2022, I had another operation to remove the regrown nasal polyps. My already tactile sense of smell was again impaired by the operation.
Until then I would I was also diagnosed with eosinophilic asthma, a subtype of asthma that causes extreme inflammation in my airways and contributes to the dulling of my sense of smell.
Living with both AERD and eosinophilic asthma can be tough, but a few months before my second surgery, I learned that there is a very effective way to relieve the symptoms. It is what would harm you if diagnosed with AERD. That thing is aspirin.
They go through what’s called aspirin desensitization, a clinical procedure in which a person with aspirin hypersensitivity, like me, is gradually exposed to increasingly higher doses of the drug to build tolerance. I have read a significant amount of research about this procedure and have also discussed it with my ENT doctor and my allergist. After training I felt 100% ready and willing to do it.
It is important to undergo aspirin desensitization within two months of nasal polyp removal. Some of the medical planners I spoke to didn’t seem to listen to me or just didn’t care that time was of the essence. They were happy to be able to postpone the appointment well into the future. I realized I had to be persistent and stand up for myself. Eventually, my persistence paid off and the desensitization procedure was scheduled for March 2022, two months after the sinus surgery.
Maureen and her extended family, 2025 (Photo/Alan Upsahl)
Desensitization with aspirin is quite interesting. For two days, my breathing was monitored in two eight-hour blocks while I was given aspirin. The amount of medication was gradually increased under close monitoring. My reactions were closely monitored. The goal was to push my body to the limit of tolerance so that I could take aspirin daily as a long-term treatment to treat AERD. And it worked: my body got there.
Since then I have taken aspirin twice a day every day. It has really improved my quality of life and I no longer have to take other medications nearly as often. My sense of smell isn’t perfect – it’s very sensitive to environmental factors, including temperature changes, but most mornings I wake up with it.
Although I am grateful, I have some concerns. Taking aspirin for a long time can be harmful to your stomach and liver. And then there are all the insurance details. Anyone who suffers from such an illness, receives Medicare and is not particularly rich must take care of insurance. Not only am I talking about the cost of medications (aspirin is affordable, but an inhaler I need is expensive), I’m also talking about reimbursement for healthcare providers.
But there is far more good than bad. I am currently polyp free and am finding incredible value in the Allergy & Asthma Network. There are so many people sharing personal experiences and making so much current research easily accessible. Many people live with AERD and/or eosinophilic asthma and don’t know they have it. They may never receive proper treatment. Nasal polyps can be difficult to detect because you need an otolaryngologist to examine your nose with a special endoscope. It’s so important to get into self-advocacy mode when you have serious health issues like allergies and asthma. This can lead to positive results for you.
One of my greatest hopes is that there will be more medical research into these conditions that I and so many other people live with. I would like to be as involved as possible and enroll in a clinical trial. I haven’t found any suitable options yet. And while I’m happy with my current treatment plan, I’m excited to see what will happen as medicine advances and awareness of AERD grows.
resources
Allergy and Asthma Network
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