Sunday, September 3, 2017

Hospital Admissions With Mast Cell Disease - Part 2

"It's not you, it's me." I have had some awkward breakups—the kind that entails burying your head under the covers to contemplate where it all went wrong. Surprisingly, the worst breakups occur at the beginning of hospital shift change. You might wonder what breakups have to do with a hospital. Observe as a patient with Mast Cell Disease catches a whiff of their new nurse's perfume and you have your answer.

As I mentioned, I once spent eight months out of an entire year inpatient at the hospital. Five of those eight months were consecutive. It is only by the grace of God I did not go completely crazy. By day one of the admission, I quickly learned that there are issues in the hospital that are unique to the diagnosis of Mast Cell Disease.

I have had my fair share of breakups, or rather, firing a doctor or nurse after they triggered an allergic reaction by wearing scented products. And, yes, I really did hide beneath to hospital bedding to avoid the waft of strong laundry detergent on a nurse.

The Hospital Admissions With Mast Cell Disease series is meant to reflect such an experience. Hospital admissions are futile if the triggers in the inpatient environment are not handled appropriately.

In case you missed it, read Hospital Admissions With Mast Cell Disease - Part 1.

Scents Are Reaction Triggers 

Mast Cell Disease reactions have many triggers. They range from foods, temperature, stress, chemicals, pain, and scents…

Yes, you read it correctly. Exposure to scents comprise only a portion of the triggers for mast cell reactions. However, it seems to be the trigger that causes the most grief. Those who do not understand the disease hold the belief that scents cannot trigger reactions, and if they do, the symptoms are never severe in nature.  

The concept of reacting to triggers so seemingly harmless and minuscule is not easily understood amongst the medical community or the general population. When explaining scent-related reactions, it is important to emphasize that it is NOT the scent itself causing reactions. Various scented products, like perfume, cologne, lotion, and cleaning supplies are comprised of chemicals. The chemicals are released into the air. Upon inhalation, the chemicals trigger reactions in sensitive individuals.

The resources in the post, Hospital Admissions With Mast Cell Disease – Part 1, are helpful to educate about the possibility of scent triggers. It is also useful in managing non-scent related hindrances in hospital admissions.

Create A Warning Sign

Posting a sign on the door outside of the hospital room serves as a warning to others not to enter if wearing scented products so that they do not inadvertently trigger a reaction.

Below are (2) examples of signs I have used for my hospitalizations:

Sign #1

"I am very sensitive to smells. Please do not enter my room if you are wearing perfume, cologne, lotion, scented soaps, etc. Thank you!"

Sign #1 is simple and to the point. Unfortunately, when encountered by those unaware of the situation, it is easily overlooked because of its size and vague wording. It does not offer an explanation, which can provoke confusion. 

Sign #2

"ALLERGIC: No perfumes, lotions, cleaning chemicals, food trays. Please do not enter room if wearing scents. Please see nurse."

Sign #2 has proven more effective. It is larger and easier to see, so oblivious, trigger laden people do not overlook it as they waltz in the room. The "please see nurse" portion lends an explanation for those not aware of Mast Cell Disease. The nurse can handle the inquiries.   

It is also inclusive of all scent related triggers with the mention of cleaning chemicals and food trays rather than focusing solely on perfumes. 

Scent Triggers From Doctors 

The largest issue in terms of scent triggers are the doctors disregarding the warnings because a) they are as uninformed as the rest of the population and do not believe scents trigger severe reactions and anaphylaxis OR b) they feel the warnings, like the signs on the door, apply to everybody except them. 


  • Educate them. 

Continue to educate using the resources in the post, Hospital Admissions With Mast Cell Disease – Part 1

  • Involve patient advocacy.  

The role of a patient advocate is to act as a spokesperson for patients. Healthcare is confusing for patients and medical professionals alike. A patient advocate helps to keep the peace.   

The success of patient advocacy at resolving conflict is dependent on the hospital. It is likely that the patient advocate does not have the clearest understanding of rare conditions either, but their involvement is a safer route than contacting the higher authorities.

  • Consult a specialist in Mast Cell Disease. 

There are a handful of top specialists in Mast Cell Disease across the globe. In my experience, they are happy to answer questions on the subject when contacted. Encourage problematic doctors to reach out to have their doubts on scent triggers clarified. Not every doctor is receptive to the idea of consulting another doctor, as that entails admitting they do not know all, but the ones who are dedicated will initiate the conversation with a specialist. 

Doctor drama arising from scent related controversy is stressful, as the options for resolution are limited. However, nurses receive the bulk of patient contact. They can become your greatest advocate or your biggest hindrance in a hospital admission. They should be a primary focus. Of course, of the following advice can apply to doctors too. 

Confronting Nurses About Scent Triggers

Nursing school advises that students are scent free in the work place. Perfumes, lotions, strong laundry detergents, and other scented products are infamous for turning the stomachs of sick patients or causing asthma attacks in those with breathing difficulties. Nevertheless, the scent free teaching is not always executed and enforced after they graduate and begin their careers in a medical setting. With Mast Cell Disease, that is detrimental. 

Nurses should possess the desire to go above and beyond for their patients. Having to request a new nurse because the one assigned is wearing perfume is, well, awkward. Even when conveyed politely you'd be surprised that the majority get majorly offended.   

  • Be informative.

Most nurses are initially ignorant to the fact that scented products are perilous to a patient with Mast Cell Disease. They do not realize that the consequences exceed a headache or an uneasy stomach. Resultantly, they do not intend to put your life at risk, or realize that there is a problem. Educating the nurse is key. 

  • Contact nurse administrator. 

It is impossible to directly address an unsafe nurse wearing scent, as that would require a lengthy exposure to a trigger. I have had the nurse administrator send a mass email to the nursing staff through the charge nurse. The email featured literature and a short video clip on Mast Cell Disease. 

  • Be kind. 

Mast Cell Disease is not a diagnosis nurses typically have experience with. The strange requests are seemingly neurotic to anyone not aware of the disease. Rudely expressing specific needs is reciprocated with disrespect and unwillingness to concede. We need to treat nurses with kindness so that they do not mind the inconvenience. 

With the five consecutive months I spent inpatient, I have witnessed numerous interactions between the patients and families and the nurses and medical staff. Nurses talk. Patient confidentiality does not hinder nurses from complaining about their complicated patients with hostile interactions.  

People in general are apt to be accommodating when they are met with courtesy. Genuinely act like you care. Change the topic of conversation to them. Ask about their day. Overall, a kind demeanor gets you far.

  • Do not be demeaning.

Nurses may not understand your diagnosis, but do not resort to belittlement or imply that they are ignorant and lacking in knowledge. 

  • Express your appreciation. 

Verbally tell your nurses how much they are appreciated. Yes, accommodating your health is their job, but don't forget to thank them regardless. Please and thank you goes a long way. 

Give a token of your appreciation if financially able. Once my family bought donuts for all of the nurses on my floor. Cards are a good idea. It can be a small gift that communicates to the nurses that they are thought about and that they are an essential part of your care. Because they really are! 

Plan To Ensure A Safe Nurse 

Depending on the hospital, nurses are assigned in advance. Speak with the charge nurse about assignments, as they have the authority to prepare staff for complications that could potentially arise.

  • Request that the charge nurse pre-informs the nurse(s) assigned to you. 

Charge nurses are in charge of the nursing assignments. They might not be aware of the exact nurse assigned to you before the shift starts, but they are able to identify which nurses are scheduled to work that day.   

Have the them call the nurse assigned to you, or all of the nurses scheduled, and warn them not to show up wearing scented products that could cause a reaction. Knowing well in advance avoids the uncomfortable conversations demanding that the nurse with scent leave.

  • Create a "safe" list. 

If admitted for an extended hospital stay, nurses become very familiar. You will discover which nurses are consistently safe and work best for your needs.   

Requesting a nurse is normally against hospital policy, as favoritism is offensive. Instead, collect a list of safe nurses and their names. Give the list to the charge nurse or whoever is appointed head of assignments for each shift. From then on, they will assign nurses to you based on that list. 

When There Is No Safe Nurse

Mishaps happen. Sometimes there are literally no safe nurses to assign. That causes controversy. A patient is in the hospital to get better, not to suffer at the hands of medical staff. 

  • The scented nurse can shower and change into different scrubs provided by the hospital. 

Showering is the proper recourse to rid of strong shampoos, lotions, and perfumes. Changing into hospital scrubs especially solves the dilemma of strong laundry detergents, as hospitals wash their linens with scent free detergents. The surgical floor is generally where they'd have to go to do this before returning to the regular floor.   

Showering is a lot to ask. I have had wonderful nurses offer to shower and change in order to care for me, which is where the idea came from. The goal is to convince the nurses to propose the suggestion themselves, rather than outright commanding them to.   

I might say, "When in this position in the past, another nurse went to the surgical floor to shower and change..." 

  • Gown up. 

My subtlety in trying to convince the unsafe nurse to shower is occasionally missed. However, having the nurse gown up prior to entering the room to administer care is an option. Hospitals have boxes of gowns outside of the room. I have had nurses that might not wear perfume, but are not fond of washing their clothes in scent free detergents. Gowns minimize and cover up traces of the scented laundry detergents.

Nurses choose a profession that exposes the true nature of their character. While some are never compelled to take drastic measures for their patients, others lovingly embark on the wild journey that is learning about and accommodating their Mast Cell Disease patients. Spending half of a 24 hour day with patients, they develop into friends as they share in the laughs and in the tears.

Reactions To Cleaning The Hospital Room

Hospitals are dirty. Janitorial staff must clean to prevent germs from going rampant. Even more predictable than a doctor's rounds is the daily presence of the cleaning bucket. Cleaning chemicals are not conducive to a patient with Mast Cell Disease, and the chances of the janitor being scented is rather high.   

My first stroke like episode reaction was triggered by the cleaning lady's Bath and Body Works lotion. The mask was not sufficient at keeping the strong waft of lotion and cleaners out. 


- Bring safe cleaning products for the janitor to use.
- Mop with water only.
- Leave the cleaning cart outside of the door.
- Have a friend or family member clean the room instead.
- Ask the nurse on shift if they would be willing to take out the trash. 

Airborne Reactions To Food In The Hospital

Instigating hunger for food other than the hardly edible hospital cuisine is not the lone problem caused by breakfast, lunch, and dinner time. Airborne food proteins are another potential hazard. People have to eat. Expect food exposure.

  • Anticipate meal times. 

The air conditioning can bring the scent of food from the kitchen into the hospital room. It is usually around scheduled times. Wear a mask according to that schedule.

  • Avoid tray food locations. 

There are various spots on the floor where the dirty trays are stored following meals. Request a room distanced from that area.

Hospital Diet

Nutrition is important in the management of Mast Cell Disease. Although nutritional interventions like tube feedings and TPN are commonly used, not all patients are in the position to entertain those options. Still, hospital food does not accommodate the extent of dietary restrictions. 

  • Bring safe food. 

If it is a planned admission, pack enough food for your stay. Friends or family can also deliver groceries or food from a safe restaurant. 

In the past, I followed a liquid raw vegan diet. Fresh fruits and vegetables that are all organic are not offered on the hospital menu. 
Groceries Everywhere!!
They permitted the use of both my juicer and blender in my hospital room. It was stored on the counter and washed in the sink. Family purchased the produce and delivered the groceries to the room that I was staying in.

Food Storage Tips

  • Request a fridge. 

Refrigeration might be necessary for your food. There is a fridge on the floor shared amongst the nurses. Since Mast Cell Disease does create extenuating circumstances, ask if they would be so kind as to allow you to use that fridge for a few of the safe food items. 

  • Purchase a cooler. 

Coolers and ice packs are convenient for the remainder of the food. 

It is true that the complexity of Mast Cell Disease leads to unwanted confrontations and issues that deviate from the usual hospital routine. However, with accommodations and support, a hospital admission can be a nice experience.