Feb 9, 2016

Aspirin Desensitivity: I'm One of the 2%

It all started with Motrin.

About 30 years ago, I took a Motrin pill for back pain. About a minute later, my throat almost closed up, I started wheezing, and I had labored breathing, finding out later I was doomed to go into anaphylactic shock. But I didn't. The kids, then10 and 5, were downstairs playing, but I couldn't even call to them for help. I just waited for death, but luckily, the trauma passed a half hour later. I was 37 then. Lucky 37.

I hadn't taken aspirin since I was a kid, and Tylenol was recommended by my doctor anyway. Aspirin is an NSAID (Nonsteroidal anti-inflammatory drugs) and Motrin, too, over-the-counter medications that can be used to relieve mild aches and pains, and reduce inflammation. So apparently, I was allergic to NSAIDS. No big deal--until now.

I found out about 10 years later after that trauma that I had Samter's Triad, a condition that consists of only 3 things in conjunction: asthma, NSAID allergy, or commonly known as aspirin allergy, and nasal polyps. Samter's Triad was confirmed again about a year ago when I went to Dr.  Lee, an ENT (ear, nose, and throat) expert for nasal polyp removal.

She said I am under control with my asthma by taking Advair every day, but there is a doctor who can most likely rid me of aspirin allergy in order for the nasal polyps not to grow back. I thought, I had the polyps removed 3 times in Philadelphia, but I wouldn't have to do it again if I was desensitized to aspirin. Huh!

But, and I'm extrapolating, aspirin, too, is a blood thinner and I'm already on Warfarin , a blood thinner as well, and there is a risk for bleeding. That was about the 100th time I heard that--risk for bleeding--because I had a hemorrhagic stroke and that means bleeding in the brain.

I went to see Dr. Petrov as she suggested, an immunologist with smarts.

The overwhelming majority are helped by aspirin desensitivity, he said. I seen to recall only 2% are not desensitized. With the odds in my favor, I had an appointment for December 7 when I would go into the hospital for 4 days with a heart monitor and be observed. The heart monitor would be used if I stopped breathing, for example, monitored constantly by the nurses on the heart floor.

I'll give you the timeline because I kept a diary of the events and here it is. Stop here if you are faint of heart.

December 7:  Went into hospital in the evening to desensitize me from aspirin allergy. Desensitization would start early the next morning.

December 8:  Took 30 mg at 8am progressing to a baby aspirin, or 81 mg, throughout the day. Went through a rough spot as I was going through desensitivity for 12 hrs.

December 9: Called the nurse at 2am and said I was leaving in the morning. Desensitivity too much. She said desensitivity is rough but I had to hold strong. I repeated the baby aspirin at 8am. Progressed more during the day to an adult aspirin. Wheezing was off and on, but the energy level was at its lowest. Had to sit on a recliner in the hall before going back to my room.

December 10: Released from hospital with, presumably, no aspirin allergy any longer. Told to take 2 baby aspirin in the morning and again at night. Not convinced. Time will tell. Dr. Petrov's associate said that if I stop the aspirin for more than 24 hours, I would have to repeat the hospital procedure all over again.

December 11: I had more-than-usual fatigue. Coughing and wheezing.

December 12-13: I was occasionally breathless and minorly coughing, still off and on wheezing.

December 14-26: I thought I had contracted the flu somehow.

December 27-January 6: Still had lingering symptoms, but I thought I had contracted a cold.

January 7-14:  Left for Portland for a family reunion and started to wheeze there. Coughing and extremely fatigued.

January 15: Left for home and thought I had contracted another cold.

January 16-20: Started getting more breathless, increased wheezing and coughing, fatigue continued.

January 21: Went to give talk to Stroke Support Group and had nurse co-chair deliver my speech. After the event, went to ER on advice of nurse where they found nothing through blood tests, and wasn't admitted. Told them about the aspirin desensitivity, but no knowledge surfaced.

January 22-26: Still panting, coughing and wheezing intensified, and got the feeling it was the aspirin. "I'm poisoning myself by still taking aspirin," said to no one in particular, but continued with the aspirin. 

January 27: I finally stopped the aspirin myself in the morning. Went to a different ER where the doctor who gave me aspirin initially practices--same symptoms but increased intensity. They gave me a chest xray, chest scan, and blood tests; admitted for observation.

January 28-29:  Status changed to in-patient where full-blown wheezing, intense coughing, panting like a canine, and lethargic prevailed. Doctor confirmed I was one of 2% the aspirin desensitivity doesn't work for.

January 30: I was released with new medications--narcotic cough medicine, Predisone to reduce the inflammation, and Mucinex to cough up the congestion. Today, I see an improvement. Little wheezing, mild coughing with once-a-day flare ups, no breathlessness, no fatigue. 

January 31-today: No wheezing, just a rattle in the chest from congestion, still coughing at random times, nothing else. Energy restored!

I'm going to see the lung expert who will once again assure me it's not pneumonia (I already know that) and Dr. Lee to convince her that the worse that happens is I'll have to repeat the nasal polyps surgery some day, now that the aspirin and other NSAIDS allergies are back to stay--forever, I imagine.

I don't hold Dr. Petrov responsible at all for the unsettling events that took place in the last 2 months. He said, as I recall, 98% would be desensitized. The odds of aspirin desensitization were in my favor. It was a gamble and I lost. But at least I tried. Trying means not giving up. And trying is the only thing that matters.