Most skaters daydream about going to Olympics, landing their hardest jump, or skating the perfect program.
I daydream about turning the ice rink into MCAS testing facility.
The idea began when I realized the ice arena was too cold for my Epi Pen and steroid injection for adrenal insufficiency. As various cases and containers failed to keep my meds warm, I flashed back to the MCAS Pee Cooler of 2015.
Mast cell activation syndrome (MCAS) testing is a rite of passage. Not only do you have to collect every droplet of urine for 24 hours, but you have keep it cold AT ALL TIMES. MCAS patients have higher levels of certain chemicals in their blood and urine, but these chemicals are extremely heat sensitive and degrade quickly. (On the positive side, thank goodness the chemicals do degrade or else we all might be dead from mast cell activation.)
Desperate for a diagnosis, I raced my pee from the toilet to the refrigerator knowing every second at room temperature risked a wasted test. At night, I worried I had added the new warm pee to the old cold pee too quickly and destroyed the specimen. The next day, my MCAS inflamed shoulder nearly dislocated hauling my pee in an ice-packed cooler to the clinic. Then I begged the nurse, who was not familiar with the test, to take care of my VIP.
No matter how diligent a patient is, all lab hope is lost if a nurse doesn’t put the blood or urine sample on ice immediately.
Which leads to my daydream:
An ice arena is the perfect place to collect blood and pee for MCAS testing.
Before you yell ew, just know we’re already peeing and bleeding on the ice anyway. Although I no longer suffer from interstitial cystitis thanks to MCAS treatment, my bladder is still vulnerable to blunt force. A figure skating coach assured me, “Everyone pees at some point. It’s inevitable.”
Don’t even get me started on hockey players.
Technically, the samples wouldn’t have to be taken on the rink, since the entire arena is cold, but in my daydream nurses assemble pop up ice houses for privacy, which honestly are more accessible than half of the bathrooms I’ve used in clinics.
My daydreams are fiscally responsible, so the test sessions would need to be group events, perhaps marketed as a MCAS lock-in party with entertainment, support groups, and prizes.
The details about food and keeping everyone from triggering each other are bit hazy, but one thing is for sure–at the end of the 24 hours, an ice cream truck would arrive.
The delivery person would hand out an assortment of allergy friendly ice cream, while the nurse loaded the samples into the temperature controlled truck to be driven to the laboratory.
It’s been 8 years since I’ve been diagnosed with MCAS and testing hasn’t gotten any easier. The only thing that’s changed is our awareness of how unreliable the tests can be.
Unfortunately, the solution is much more complicated that skating rinks and ice cream trucks. Even if the physician orders the tests, the patient follows the instructions, and the clinic ships the test perfectly, laboratories often do not handle the samples properly. Most lab staff are unfamiliar with MCAS. This is why seeing a MCAS specialist who has established a relationship with laboratory staff to ensure proper handling can be so valuable.
Even if we did have reliable test, we don’t fully understand mast cell mediators or how to measure them. To be fair, the first case studies on MCAS were published in 2007. Research takes time and money.
In the meantime, more doctors are learning how to clinically evaluate for MCAS and identify when treatment trials are warranted. My positive tests provided proof of my diagnosis and disabilities (which swayed some skeptical medical providers), but in the end, access to treatment was most important. Treatment changed my quality of life, not some lab results that researchers can’t agree on how to interpret. I dream of a day MCAS patients don’t have to put their pee in their refrigerators for concrete validation, but for now, I hope we can continue to make more people feel better.
Note: This post’s photo is absolutely photoshopped. I hope my days of carrying a pee jug in public ended years ago.
Although specimen collection as soon as possible following an acute flare of symptoms is ideal, there is no need to wait for such an event when initially assessing the patient with longstanding baseline symptoms consistent with aberrant MC mediator release. However, if the initial laboratory assessment in a patient with a history suspicious for MCAD is negative, repeat testing is usually warranted but preferably should be deferred until the presentation of an acute flare.
– Afrin LB, Molderings GJ. A concise, practical guide to diagnostic assessment for mast cell activation disease. World J Hematol 2014; 3(1): 1-17 [DOI: 10.5315/wjh.v3.i1.1]
