My Aspirin Desensitization Update

It has been two years since I was desensitized to aspirin at the Mayo Clinic in Rochester, Minnesota, USA. I’ve had several inquiries, both here on my blog and in emails, asking how I’m doing. The answer is I am doing good. Not great, like I-never-had-a-sinus-problem, not lousy, like why-did-I-even-bother.  But good is ten times better than I was before I went to the Mayo Clinic.

That’s an honest answer, but it doesn’t really tell you very much, does it? Let me begin with some background. I have had repeated sinus infections for about 30 years. Maybe only 25. I honestly can’t remember. It seems like my whole life I’ve had sinus trouble. Infections don’t respond well to antibiotics, but I’ve had a LOT of them. Over the years, I have become a connoisseur of antibiotics. In addition to the infections, I also have sinus polyps, which doesn’t help with the infections. Since the antibiotics don’t work, I’ve had multiple sinus surgeries. I might get a few months of relief after a surgery, but the polyps came back in only a few months each time. I also developed asthma. And aspirin or ibuprofen could literally send me to the Emergency Room. I spent years sleeping with a wet pillow and a dry mouth because I couldn’t breathe through my nose. I had NO sense of smell. And somehow, the loss of being able to smell my coffee in the morning was the worst thing of all. It was a nightmare way to live. You get the picture, right? Bottom line: Maddy was miserable.

Then my new ENT told me I had Sampters Triad, also called AERD (Aspirin Exasperated Respiratory Disease) and suggested Aspirin Desensitization. You can read about my actual procedure on an earlier post here.

So, what do I feel like today, 2 years after the procedure? For one thing, my head feels light. No pressure and pain or the weight of congestion.  I can always breathe through my nose. Seriously. Even during two sinus infections I’ve developed in the past two years, I could breathe through my nose. And did you catch that? Only TWO infections??!!! Right now I am suffering with allergies (it’s October, right?) and I feel a little crappy, but this is only a faint shadow of what I used to feel like EVERY SINGLE DAY. And I know it will go away in a few weeks.

I have some sense of smell.  It’s not a vivid as I would like, but this morning I smelled my coffee, even with a little congestion from the allergies. This might be partly because I get a kenalog shot in the spring and in the fall. I had one in May, and it is still working well enough for me to smell my coffee. I call that a win. People who have never lost their sense of smell may not truly understand how wonderful it is to come out of the shower and smell the coffee brewing in the kitchen.

AERD is the kind of thing that can make life difficult. And since it it pretty much invisible, sufferers don’t get much sympathy. People have told me things like, “Don’t sweat the small stuff. Better to lose your sense of smell than your sight.” Which is completely true. I even joke about not having to smell the cast box. But imagine not smelling when the toaster catches fire.  Or the roses your husband gave you for your anniversary. Or the scent of your baby’s hair. It IS a loss, but unless you’ve experienced that loss, it doesn’t seem like a big deal.

Are the polyps back? Possibly. My doctor said she couldn’t see any, but she was only looking with the naked eye. The linings of my nasal passages were a little thicker than is normal. That could be from repeated infections and surgeries. There may be polyps up higher in the sinuses that she cannot see, but as long as I am able to breathe she isn’t too concerned about them. I’m guessing the rhinocort I use daily is keeping them at bay.

I am still taking two aspirin a day, along with a zyrtec. Before the procedure, I used to use my albuterol inhaler every day, usually multiple times. Now it’s only when I’m going to exercise and occasionally if I start to feel out of breath. The budesonide rinses are out of my budget, so I just irrigate my nose with saline several times a week (more at the moment with the allergies) and use Rhinocort before bed.

When people ask me if I’m glad I did the aspirin desensitization, my answer is a resounding YES. My sinuses are not perfect. I still get a bit congested, and my sense of smell isn’t as strong as I’d like it to be. But just being able to breathe has made my life so much better. Breathing means better sleep, and better sleep means more energy, and more energy means I get to do more of the stuff I want. I’m not much of a drinker, but I can even enjoy a glass of red wine, which two years ago would have sent me into wheezing overdrive. So, yeah, I’m glad I did it.

Have you had the Aspirin Challenge done? How has it affected your life?