Darcy’s Blog: A Mysterious Health Issue

I never had asthma until a year and a half ago. One night, Gunnar and I were getting ready to go to bed in his bedroom back home in Long Island, like we had for years. Out of nowhere, my throat and chest started to feel very tight.

“Oh no…” I thought, “I’m coming down with strep right next to Gunnar.” My first thought was that I was suddenly falling ill, and that I would get Gunnar sick.

I left Gunnar’s room to go sleep in the guest bedroom so that I would not share my germs. I was surprised when I woke up the next morning feeling totally fine. I wasn’t sick at all. “Odd, but yay!”

Fast forward a few days, and I was back at Gunnar’s to spend the weekend. It was Friday night, and we went up to bed after watching a movie. I got into bed, pulled up the covers, closed my eyes, and then bam. Chest tightness. Coughing. Wheezing. Difficulty breathing. I tried to tell Gunnar what was going on, but my voice sounded like a hoarse whisper. I immediately took Benadryl and Zyrtec, and over time I felt better.

What the heck was going on? I do have minor allergies to dust and some other random things, so we figured maybe Gunnar’s room had some hidden dust behind the bed. His Mom did a deep cleaning of his room, just in case.

And yet, when I was back the following weekend, the same. thing. happened. Within minutes of getting into Gunnar’s bed for the night, I had a full blown asthma attack and ended up sleeping in the guest room in a deep Benadryl induced slumber.

Not only were we concerned about my asthma attacks, but we were all worried that there was some dangerous allergen in Gunnar’s bedroom that could be dangerous to him, too. His Mom hired an air quality professional to come do testing in his room for things like mold spores, contaminants, and other possible irritants. All the testing came back negative – his room was clean as a whistle.

We started to joke that I was just allergic to Gunnar. Perhaps he was sweating out an antibiotic that I was allergic to…? I started to sleep in the guest bedroom whenever I stayed over.

The whole “allergic to Gunnar” theory started to hold more weight when we moved to New Hampshire and my asthma attacks came with me. It wasn’t just Gunnar’s bedroom in New York anymore, it was our New Hampshire bedroom as well. I kept Benadryl on our nightstand and spent several nights sleeping downstairs on our couch.

No one, including the doctors I went to, had any answers as to what could possibly be going on with a woman who had asthma attacks when getting into bed with her partner.

Until about a month ago…

One of the best parts about living in New Hampshire is that we both play intramural ice hockey, and Gunnar plays on the club team, too. One of the worst parts about playing hockey as an adult, is that our games are often at absurd hours. Several weeks ago, Gunnar had a game against Harvard Business School scheduled for 12:00am. Yes, the puck dropped at midnight. There was absolutely zero chance I was going to go watch his game that late, and Blinky and I were in bed by 10pm.

To make Gunnar’s life a little bit easier, I decided to set up his overnight feed for him. That way, when he got home close to 2am, he could hop in the shower, slide into bed, and plug right into his feed.

Setting up Gunnar’s feed means attaching the bag to the pump and preparing three bags of Liquid Hope. Gunnar chooses to use an older pancreatic enzyme with his overnight feeds called Viokase because they can be easily crushed into a fine powder.

Step 1: Pour 2 pouches of Liquid Hope into bag

Step 2: Crush 4 viokase enzymes in the pill crusher

Step 3: Add crushed enzymes to bag

Step 4: Pour 1 pouch of Liquid Hope into bag

Step 5: Crush 2 more enzymes in the pill crusher

Step 6: Add crushed enzymes to bag

Step 7: Squeeze bag to distribute enzymes into formula evenly

By Step 3, the familiar chest tightness came on. By Step 5, I was wheezing. I quickly took some Benadryl and puffed my albuterol (which had been prescribed to me to combat my sudden onset asthma).

This was the first time I had an asthma attack in our room when Gunnar was not there. Since the asthma attack came on when I was setting up his feed (and more specifically, when I was crushing his enzymes), I decided to do a bit of research on the tried and true Google.

I was shocked when this came up on the very first website I looked at:

“The dust or finely powdered pancreatic enzyme concentrate is irritating to the nasal mucosa and the respiratory tract. It has been documented that inhalation of the airborne powder can precipitate an asthma attack. The literature also contains several references to asthma due to inhalation in patients sensitized to pancreatic enzyme concentrates.”

I had cracked the code. I went to the literature. And found THESE ARTICLES:

Hypersensitivity to pancreatic extracts in parents of patients with cystic fibrosis” by Frank J. Twarog et al. (1977)

AND

IgE mediated hypersensitivity to pancreatic extract (PE) in parents of cystic fibrosis(CF) children” by Mitchell Ganier and Phil Lieberman (1979)

Both these articles are about parents of children with CF, who developed asthma after inhaling pancreatic enzyme powder in the air.

Take a look at this quote from one of the articles:

Twarog, F, et al. “Hypersensitivity to Pancreatic Extracts in Parents of Patients with Cystic Fibrosis.” Journal of Allergy and Clinical Immunology, vol. 59, no. 1, 1977, pp. 35–40., doi:10.1016/0091-6749(77)90174-9.

My mind was blown. I was having a reaction to the freaking enzyme powder!! Have you ever crushed an enzyme in a pill crusher?? It creates a big cloud of enzyme extracts, waiting to be inhaled. Gunnar had switched to these specific enzymes about a year and a half ago, because they are able to be crushed and added to his overnight formula bag. Prior, he would have to awaken in the middle of the night to swallow his regular enzymes in order to digest his overnight feeds.

Everything was adding up…

If you’re wondering why there are two articles about CF parents developing asthma from airborne pancreatic enzymes, but not CF patients, the studies note that CF patients also take the enzymes orally, and it is believed that the oral administration of the enzymes prevents subsequent induction of hypersensitivity to the same antigen. I’m more right-brained than left-brained, so I’ll leave it up to you readers to figure that one out!

The mystery had been solved. I wasn’t allergic to Gunnar after all (phew).

These days, Gunnar crushes his enzymes in our laundry room, rather than our bedroom. I have not had an asthma attack since. If you are reading this, and you are strangely “allergic” to your loved one with CF, let your doctor know about the research on pancreatic enzyme powder induced respiratory distress!


Gunnar’s note: Viokase isn’t a widely used cystic fibrosis drug. It was one of the original enzyme options for patients before Creon, ZenPep, etc. The reason I use it (and I only use it for my overnight feeds) is because it can be easily crushed and added to my bag. I absolutely hated waking up in the middle of the night to take enzymes at the end of my feed, so I looked for a new option. Unfortunately Relizorb is not compatible with my feed choice – Liquid Hope – so I have to use enzymes the old fashioned way.